RI Faces High Cost For Fixing DD ADA Violations

By Gina Macris

After funding services for adults with developmental disabilities below their actual costs for nearly a decade, the state of Rhode Island is about to experience sticker shock.

The system of private agencies that provides most services for adults with developmental disabilities is on the verge of collapse, by all accounts, and a federal judge has given the state until Dec. 18 – five days from now – to come up with the money to keep it afloat until the next fiscal year.

The state also is under court order to devise and execute a plan for strengthening the system during the next three years so it can comply with a federal civil rights agreement that requires Rhode Island to integrate adults with developmental disabilities into community life by 2024. With the judge ready to use his power to enforce the consent decree, those costs could increase spending on developmental disability services by a third or more in the next several years.

Last month, a federal court monitor addressed the short-term fiscal gap by suggesting that the state release $2 million a month in unspent funds already allocated to developmental disabilities simply to keep the agencies’ doors open over the next six months. The COVID-19 pandemic has forced agencies to shrink services and drastically reduce billing.

Judge John J. McConnell, Jr.

In a recent hearing before Chief Judge John J. McConnell, Jr. of the U.S. District Court, a spokeswoman for service providers took a different approach, saying the state needs to immediately raise direct care pay, now an average of $13.08 an hour, to enable the private agencies to recruit and retain employees during the pandemic.

Roughly two thirds of these essential workers are women and more than half are people of color, according to the trade association spokeswoman.

A recently-completed report from the association, the Community Provider Network of Rhode Island (CPNRI), fleshes out projected costs:

• An hourly increase of $2.32, to $15.50, would require nearly $44.1 million a year, or 16.4 percent more than the state has currently budgeted.

• A hike to $17.50 would mean an additional $79.8 million, or a 29.7 percent increase in the annual budget

• A $20 hourly rate would add $124.5 million to the budget. That would amount to a 46.4 percent increase in spending.

The report, “A System in Crisis,” said employers need to be able to offer $17.50 immediately to get job applicants in the door during the pandemic. In Fiscal 2022, which begins July 1, the rate should be increased again to $20 an hour.

Monitor’s Calculations More Limited In Scope

The monitor, meanwhile, agrees with the need for pay hikes, although he would allow the state more leeway on the timeline. In his latest report, filed with Judge McConnell Nov. 30, the monitor, A. Anthony Antosh, said the state should raise hourly wages to $17.50 “as quickly as possible” and to $20 by Fiscal 2024, which begins July 1, 2023.

A. Anthony Antosh

Antosh’s fiscal analysis focuses primarily on the changes needed in the final three years of the consent decree. He said there is consensus among various stakeholders with whom he has consulted that staffing and fiscal issues are the two main concerns in implementing the 2014 civil rights agreement.

“The state budget deficit resulting from the COVID-19 pandemic significantly complicates any fiscal analysis and any decision-making about budget planning,” he said.

Antosh makes no specific dollar recommendations but says that figures should be negotiated with provider agencies in a three-year budget plan to be completed in time to begin in the next fiscal cycle on July 1, 2021. He emphasized that the agencies provide 83 percent of the services necessary to support those protected by the consent decree.

Antosh said an ongoing review of the entire fiscal and reimbursement system, itemized in a 16-point court order issued by McConnell July 30, should be complete by June 30, 2021.

He also recommended that steps be taken now to make sure that the specific costs of a strengthened developmental disability system are acknowledged when future state budgets are being developed.

For example, the data on caseloads provided monthly by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) to the General Assembly should be included in the Caseload Estimating Conference used to determine human service needs in the overall state budget. That is also one of the final recommendations of the “Project Sustainability Commission,” a a special legislative commission headed by Staite Sen. Louis DiPalma, D-Middletown.

While not acknowledging the actual costs, which pay for entitlement services under provisions of the Americans With Disabilities Act, the General Assembly has often criticized the state’s developmental disabilities system for running over budget.

The governor typically relies on the November caseload and revenue estimating conferences to draw up the budget that is submitted to the General Assembly in January. The legislature, in turn, relies on more finely tuned caseload and revenue estimates in May to finalize a spending plan for the next fiscal year.

Monitor’s Numbers “Illustrate” Solutions

Antosh’s report includes five sets of fiscal projections that can best be described as starting points for discussion rather than cost estimates for system-wide change. For reasons related to the language of the consent decree, the monitor’s numbers cover individuals who were identified in confidential documents between 2013 and 2016 and today make up about 67 percent of the entire population with developmental disabilities.

Antosh said the tables of projections and descriptions of the associated costs “illustrate” various options in reconfiguring daytime services for the 67 percent.

The most comprehensive “illustration “ of the cost of re-inventing daytime employment and leisure activities for the specific portion of the population protected by the consent decree would add $35.6 million to the budget in Fiscal Year 2022, which begins next July 1, Antosh said. An additional $14.9 million would be needed in Fiscal 2023 and $15.8 million extra would be added in Fiscal Year 2024.

In addition to protecting a particular class of people, the consent decree is supposed to lead to a system-wide transformation. And state officials have made clear that they intend to include all people eligible for developmental disability services in a reformed system, not just those identified at the time of the consent decree.

The three increases projected by Antosh add up to about $66.3 million a year in three years’ time. Antosh said the increases need not all come from Medicaid funding but draw on a variety of other public and private sources.

The current annual approved budget for the private service providers is about $268.7 million in federal-state Medicaid funds, although the providers’ ability to bill for reimbursement has shrunk since the start of the pandemic.

Actual spending on privately-run services was about $240.8 million in the fiscal year that ended June 30, 2019, according to state budget figures. Antosh said the increases need not all come from Medicaid funding but draw on a variety of other public and private sources.

CPNRI, meanwhile, offered estimates for system-wide reform that would not only increase wages but provide for more labor-intensive supports in the community in keeping with the requirements of the consent decree. The organization’s report said that at a direct care rate of $17.50 an hour, the more labor-intensive option would cost between $112.9 and $158.9 million, depending on the number of hours provided and other variables, including the level of independence of each individual as perceived by the state’s assessment tool.

CPNRI’s report incorporated work completed earlier this year by BHDDH consultants, as well as earlier projections done for the state by different consultants.

COVID-19 Exacerbates Inequities

The pandemic has highlighted the inadequacy of the poverty-level pay of direct care workers in the private sector. The average wage of $13.18 an hour falls below many entry-level jobs in retail, delivery, warehouse, restaurant and janitorial fields, according to the recent report from CPNRI.

That rate is also nearly $5 less than the $18 minimum hourly rate the state pays its own employees to do the same work, running a small parallel system of group homes for about 125 adults with developmental disabilities.

The years-long difficulties faced by providers in recruiting staff have reached critical proportions during the COVID-19 pandemic, leaving many individuals without services and crippling the agencies’ ability to generate income.

The crisis has been nine years in the making.

In 2011, the General Assembly devalued the private provider system when it adopted a new reimbursement model and budget cuts that were justified with an executive branch memo that simply said providers could deliver the same services with less money.

The $26- million budget cut resulted in layoffs and slashed wages. Entry-level positions for caregivers, once the starting point of a career ladder for caregivers who did not necessarily have college degrees, became minimum-wage, dead-end jobs.

At the time, the Department of Behavioral Healthcare, Developmental Disabilities (BHDDH) ignored the recommendation of an outside consultant who said direct care workers should receive a minimum of $15 an hour within a year’s time.

The state pleaded poverty in the aftermath of the financial crash of 2008 and 2009, but by 2011, most other states were either holding steady on previous cuts or beginning to reverse reductions in human service spending, including those for people with developmental disabilities.

The austerity move accompanied a new reimbursement system billed as “Project Sustainability,” intended to equitably distribute available funds to eligible adults with developmental disabilities. The reimbursement model incentivized congregate care in sheltered workshops and day care centers – the least costly form of supervision. Subsequently, the DOJ found that an over-reliance on congregate care violated the Integration Mandate of the Americans With Disabilities Act. That finding led to the consent decree.

In a recent report, CPNRI said that COVID -19 has thrust a system developed and funded for congregate care into one that must deliver personalized services to mitigate infection among a vulnerable population.

Long-term effects of neglect on the system prevent providers from being “agile and responsive to meet the demand and needs of the community,” said the report. For example, the reimbursement model assumes that 40 percent of services will be delivered in center-based care, which is prohibited by public health concerns.

Read the court monitor’s report here.

Read the CPNRI report, “System in Crisis” here.

RI DD Legislative Commission Seeks To Change Payment Methods For DD Service Providers

By Gina Macris

Louis DiPalma * All Photos By Anne Peters

Rhode Island must find an alternative to the fee-for-service system used to reimburse private agencies that provide services to adults with developmental disabilities, a special legislative commission has concluded after more than a year’s study.

The 21-member panel chaired by State Sen. Louis DiPalma, D-Middletown, is finalizing more than a dozen recommendations, most of them aimed at changing key provisions of the payment system, known as Project Sustainability, which has been in place since 2011. Then, Rhode Island’s approach to serving adults with developmental disabilities relied heavily on sheltered workshops and day centers, an approach that figured in a civil rights investigation by the U.S. Department of Justice two years later.

Rhode Island no longer has sheltered workshops, thanks to a 2014 consent decree resulting from the DOJ investigation, which calls for enabling adults with developmental disabilities to become part of their communities in accordance with the U.S. Supreme Court’s Olmstead decision reaffirming the Integration Mandate of the Americans With Disabilities Act.

But the underlying regulations of Project Sustainability, coupled with inadequate funding, still hinder the best efforts of state officials, professionals and families to help adults with developmental disabilities engage in the activities they choose in their communities, according to testimony heard by the commission.

DiPalma presented the recommendations at a Jan. 14 meeting that concluded the work of the Project Sustainability Commission but set the stage for continued engagement by a smaller steering committee and subcommittees to advance the implementation of legislative and other changes.

The commission would replace fee-for-service reimbursement with “bundled” allocations for individuals that would give providers a set sum for each client over the course of a year, providing greater flexibility in individualizing programs. One recommendation would also simplify the billing process.

The current system guarantees funding for only three months at a time, with documentation of daytime activities required in 15-minute increments. By regulation, staffing ratios are linked to one of five levels of funding a particular person receives, not to the staffing required to support a person at any given time.

In this scenario, some residents of a group home may end up going along on a housemate’s outing, even though they have no interest in it. The commission recommends such ratios be eliminated to allow providers greater flexibility in assigning staff.

The commission’s recommendations cover some of the same ground as outside consultants who are in the midst of an 18-month study of the developmental disability system at the behest of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH). The consultants are supervised by the New England States Consortium Systems Organization (NESCSO), which is expected to conclude its work June30.

DiPalma’s expectation is that NESCSO will recommend a way forward for a new funding model to support individualization and integration in the community, with an emphasis on increasing employment opportunities for adults with developmental disabilities.

Kerri Zanchi (R) Speaks while A. Kathryn Power, NewBHDDH Director, Listens

Kerri Zanchi, a commission member and director of the Division of Developmental Disabilities at BHDDH, reminded DiPalma during the Jan. 14 meeting that NESCSO was hired to provide the department with options, not to make specific recommendations on ways it should restructure.

DiPalma said he appreciated Zanchi’s remarks, but “we’re here because of 2011,” the year the General Assembly enacted Project Sustainability, with a $26-million budget cut that ignored recommendations by outside consultants. The average pay for direct care workers still falls below the benchmark of $13.97, an hour recommended by the consultants in 2011.

“We’re still trying to claw our way out of that hole,” DiPalma said. He reiterated his view that NESCSO should be asked to make recommendations, not simply suggestions.

High on DiPalma’s priority list is a multi-year effort to address critical shortages of direct care workers by gradually increasing wages to make Rhode Island competitive with Massachusetts and Connecticut, one of the funding-related recommendations supported by the commission.

He encouraged commission members to continue their advocacy in a direct and respectful manner. “Do not take no for an answer on changes that are necessary,” DiPalma said. “Do not be combative,” he said, but open the door to collaboration and compromise by outlining the problem and asking for help in figuring it out.

The Commission’s funding-related recommendations said the budgeting process should be transparent. The developmental disabilities caseload should be part of the Caseload Estimating Conference held in conjunction with the Revenue Estimating Conference twice a year by the chief fiscal officers of the governor and the legislature to better inform budget preparations regarding the state’s social service obligations, the commission said.

In addition, the state should no longer use a disability-related assessment for calculating individual funding allocations according to a secret formula, or algorithm. Instead, the commission said, the assessment, called the Supports Intensity Scale, should be used for helping planners design programs of support for adults with developmental disabilities, the purpose for which it was designed by the American Association on Intellectual and Developmental Disabilities.

To eliminate inherent conflicts of interest between the state funding apparatus and service providers, individual service programs should be written by independent planners, the commission recommended. It did not favor a separate multi-million dollar social service case-management entity, called a “Health Home,” which BHDDH hopes to set into motion with Medicaid funding to satisfy federal conflict-of-interest regulations.

The commission also wants to bring to the table a barrier cross-section of public agencies to work on eliminating barriers to integration, like challenges in transportation and employment-related services. These agencies would include the Rhode Island Public Transit Authority and the state Department of Labor and Training (DLT), in addition to BHDDH and the Office of Rehabilitation Services, as service providers, families and consumers.

DiPalma said he would like to see BHDDH ask DLT to take the lead on employment services for adults with developmental disabilities.

Among other recommendations are these:

• BHDDH should establish crisis intervention capabilities that can respond to mental health emergencies in the community and prevent costly psychiatric hospitalizations

• The state should create a seamless transition for young people and their families from high school to adult services. The existing process has been compared to “falling off a cliff.”

DiPalma said the recommendations will be finalized in the coming week to incorporate comments made at the meeting. A steering committee, including himself and seven other commission members, will remain active, setting into motion small working groups to address legislative and other issues and reconvening every three months to review progress.

He asked the commission members “to do one thing: hold yourself and each of us accountable to stay on track” on behalf of the 3,835 people who currently receive developmental disability services.

RI Project Sustainability Commission To Meet Jan. 14 To Wrap Up Recommendations

By Gina Macris

The special legislative commission studying the way Rhode Island pays for developmental disability services will hold its final meeting Jan. 14 to summarize some 70 recommendations that have been submitted by the commission’s 21 members, according to its chairman, State Sen. Louis DiPalma, D-Middletown.

The panel, which began its deliberations during the fall of 2018, has been dubbed the Project Sustainability Commission after the name of the fee-for-service reimbursement system for private agencies that deliver most state-funded social services to some 4,000 adults with developmental disabilities.

Project Sustainability, enacted by the General Assembly in 2011, has been widely criticized by service providers and families as an excuse to cut funding.

Project Sustainability is under review by the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, which has hired outside consultants to expand its analytical capabilities. The review, expected to conclude in June, is separate from the commission.

The commission meeting on Jan. 14 will begin at 2:30 p.m. in the Senate Lounge of the State House.

NESCSO Will Not Offer “Magic Number” on RI DD Rate Review, Leaving Decisions To BHDDH

Rick Jacobsen *** All Photos By Anne Peters

By Gina Macris

A consultant to a regional consortium reviewing Rhode Island’s developmental disability service system outlined the scope of the group’s work and time line to a July 30 meeting of a special legislative commission.

The consultant also disclosed some preliminary findings about “Project Sustainability,” the fee-for-service reimbursement system also being studied by the General Assembly’s commission. No one appeared surprised by the early findings.

For example, the developmental disabilities caseload has had a compounded annual growth rate of 3 percent in the last five years, from 3,744 to a current total of 4,297.

And the data shows that the private agencies that provide most of the direct services – and bear the brunt of the work necessary to comply with a federal civil rights agreement - operate on precarious financial margins.

The presentation to the Project Sustainability Commission was made by consultant Rick Jacobsen and his boss, Elena Nicolella, executive director of the New England States Consortium Systems Organization (NESCSO), a non-profit group that provides analysis in the fields of health and human services to five states. The meeting was held at the Arnold Conference Center at the Eleanor Slater Hospital.

Nicolella and Jacobsen encountered pushback when they explained the role defined for NESCSO by the state Department Behavioral Healthcare, Developmental Disabilities and Hospitals.(BHDDH).

NESCSO will present options to BHDDH for system improvements toward the project goal of maximizing “opportunities for people to fully participate in their community,” according to a Powerpoint presentation that accompanied the talk. But it won’t deliver an independent recommendation or “magic number” on costs, Jacobsen and Nicolella said.

Tom Kane, CEO of AccessPoint RI, a private provider, said long experience in system-wide reform has taught him that the approach chosen by BHDDH is doomed to fail unless the effort also states the true cost of evolving to an integrated community-based model.

L. to R.: Andrew McQuaide, Kim Einloth, Tom Kane

There has been no “tolerance” for even “having a (public) discussion about the cost of investing in the change process,” said Kane. “If you shift funds in an underfunded system, it’s not going to work. It’s just going to make the hole deeper,” he said.

In the 1980s and 1990s, when advocates pushed to close the Ladd School, the state’s only institution for people with developmental disabilities, “there was a community behind us, and we put an investment in the system in order to make that change happen, and it was dramatic change,” Kane said.

But there was no investment in changing the system in Project Sustainability, enacted in 2011, Kane said.

While the healthcare consultants Burns & Associates recommended an investment that was millions of dollars more than was being spent, Kane said, that number was never made public or discussed in the General Assembly. “What we ended up with was millions of dollars cut,” he said.

A few years later, when the demand grew for more community-based services, those reimbursement rates increased, but rates for center-based care decreased, despite the fact that providers continued to have the same fixed costs, Kane said.

The history of Project Sustainability has prompted a certain amount of “agida” among service providers regarding NESCSO’s work, said Andrew McQuaide, a Commission member.

“Having gone through a similar process and getting an end product that turned the system around and took us backward,”he said, providers are nervous that “we could go through a very similar process and come up with a poor product.”

He said his remarks did not reflect in any way on the current administration. Rebecca Boss, the BHDDH director, and Kerri Zanchi, the director of the Division of Developmental Disabilities, are both commission members and attended the meeting.

McQuaide and A. Anthony Antosh, another commission member, both urged Boss to make public all the data and reports produced by NESCSO, whose contract runs through June, 2020.

Antosh said there ought to be a direct relationship between the goals of the rate review and the recommendations of the commission. Commission members have submitted individual recommendations, which all advocate for the self-determination of adults with developmental disabilities. Their work will be synthesized into a final report, according to the commission chairman, Sen. Louis DiPalma, D-Middletown.

The manner in which NESCSO’s work will be shared with the public is under discussion, Boss said. She and Zanchi said they didn’t think it would be the best use of everyone’s time if the public discussion got bogged down in the minutia of the analytics at each stage in the process.

“We don’t want to be pulled off course but be mindful of the project as a whole,” Zanchi said.

Jacobsen and Nicolella said that NESCSO intends to produce data to enable BHDDH to make both near-term changes and longer-term reforms.

Preliminarily analysis of the audited financial statements of 16 private provider organizations confirms that the system is operating on a very close financial margin, said Jacobsen.

Elena Nicolella

That’s not unusual, he said. Human services agencies across the country are in similar positions. At the same time, the tight finances mean the agencies may tend to be averse to risks like investing in system change or taking on new clients, Jacobsen said.

Jacobsen presented a preliminary analysis of audited financial statements from 16 provider agencies over the last two years, with tables organized according to the number of fiscal reports. The agencies were not identified.

For example, out of a total of 27 audited financial statements, 15 showed deficits and 11 showed surpluses. Of the 11 surpluses, 6 were less than 3 percent of revenues.

In another table summarizing 24 financial statements, 12 of them showed less than a month’s cash on hand at the end of the fiscal year.

And a third table on liquidity said that of a total 24 financial statements, only 4 had working capital to carry their agencies longer than 2 months. At the other extreme, 7 statements said their agencies had no working capital or were lacking up to two months’ worth at the end of the fiscal year.

Jaccobsen said the state has made advance payments to some struggling agencies, but these advances have been carried as liabilities on the books.

Commission members said that for some organizations with multiple sources of income, the agency-wide audited statements do not give an accurate picture of the fiscal margins in developmental disabilities.

Regina Hayes, CEO of Spurwink RI, and Peter Quattromani, CEO of United Cerebral Palsy, suggested that the financial picture is worse than it looked in Jacobsen’s tables and asked him to go back and look only at the income and expenses related to developmental disabilities.

Jacobsen said NESCSO will spend the entire month of August listening to providers. Engagement with consumers and their families is scheduled for September.

An analysis of earnings figures from the Bureau of Labor Statistics for May, 2018 indicated that the wages for direct care workers in Rhode Island are close to the median in comparison to other states. That doesn’t mean that agencies can hire and retain employees, Jacobsen said.

Here too, Jacobsen was asked to look more closely at the figures.

Louis DiPalma and Rebecca Boss

The commission chairman, DiPalma, said the figures Jacobsen used didn’t account for a raise the Connecticut legislature gave to all its developmental disability direct care workers to a minimum of $14.75. In Massachusetts, 30,000 people working as personal care attendants, including many working with adults with developmental disabilities, make $15 an hour, DiPalma said. And the figures Rhode Island reports to the Bureau of Labor Statistics put developmental disability workers in the same category as home health aides, who make more, DiPalma said. According to a trade association representing two thirds of private providers in Rhode Island, entry-level direct care workers make an average of $11.44 an hour. (They are soon to get raises.)

When Jacobsen mentioned that NESCSO plans to compare Rhode Island’s developmental disability services to those in other states, Kane, the AccessPoint CEO, said the consultants must make sure to include the amounts the other states spend on institutional care.

A comparison of community-based services among states does not yield a true picture of total state spending on developmental disabilities, since most other states also have institutions, Kane said. But Rhode Islanders who in other states would be institutionalized live in the community in Rhode Island instead, said Kane.

Jacobsen also presented other preliminary statistics:

• There has been a 15 percent compounded increase in the number of people who direct their own programs in the last five years. NECSCO will look further at whether the increase has occurred by choice or whether it results from individuals and families being unable to find suitable services from agencies. “I suspect it’s a mix of both,” Jacobsen said.

• Of a total of nearly $216.2 million in reimbursement claims paid by the state in the 2018 fiscal year, 51.4 percent was for residential expenses and 48.6 percent was for daytime services, case management, respite care, and independent living or family supports.

· In the category of daytime services, 4.2 percent, or nearly $4.5 million, was spent for employment-related and pre-vocational activities. Increasing employment is one of the main goals of the consent decree.

Two RI DD Events Scheduled For Tuesday, July 30

The special legislative commission studying Rhode Island’s reimbursement system for private providers of developmental disability services and the state’s Division of Developmental Disabilities will each hold separate events the afternoon of Tuesday, July 30.

The commission meeting will feature an update on the ongoing rate review from Elena Nicolella, the executive director of the New England States Consortium Systems Organization, which is supervising the work, according to state Sen. Louis DiPalma, D-Middletown, chairman of the panel..

He said the commission’s regular meeting place, the Senate Lounge in the State House, will not be available that day. The panel will meet at 1 p.m. in the Arnold Conference Center in the Regan Building of Eleanor Slater Hospital, off Howard Avenue in Cranston.

From 4 to 6 p.m., the state Division of Developmental Disabilities will host a community forum at the Cumberland Public Library, 1464 Diamond Hill Rd., Cumberland. Anyone interested in attending may email agenda topics to BHDDH.ASKDD@bhddh.ri.gov (Click the email address or copy and paste it into your email program.)

Collaboration Needed to Find Jobs, Solve Transportation Problems, For People With DD

By Gina Macris

For people with developmental disabilities, reliable public transportation – or the lack of it – can mean the difference between accepting a job offer and staying home.

A Coventry, RI man who had a chance to work at a Home Depot near his home faced that dilemma when he learned that the state’s paratransit system for people with disabilities could not go into the shopping center where the store is located.

To solve the transportation problem, the man’s family and his job developer, Rory Carmody, Director of Program Services at AccessPoint RI, pitch in to drive him to and from work, said Carmody’s boss, Tom Kane. But the hours the man can work are limited to the times Carmody and the man’s family are available for drop-off and pick-up, said Kane.

Kane, the CEO of AccessPoint, shared the story in a conversation after a June 18 meeting of a special legislative commission studying Project Sustainability, the state’s fee-for-service reimbursement system for private services for adults with developmental disabilities.

L to R: Scott Jensen and Scott Avedesian

The session focused on the intersection of jobs and transportation, featuring remarks from three speakers:

· Scott Avedesian, CEO of the Rhode Island Public Transit Authority (RIPTA)

· Scott Jensen, Director of the Department of Labor and Training (DLT)

· Robert Kalaskowski, Chief of Policy and Planning for the Governor’s Workforce Board.

The example of the Coventry man illustrates the challenges of relying on the paratransit program, which operates only along corridors that mimic RIPTA’s regular bus routes. The shared RIde program for people with disabilities may drop off and pick up at sites no more than three-quarters of a mile outside a regular bus route, according to the RIPTA website.

Because RIPTA doesn’t send regular buses to Little Compton or Foster, the RIde option for residents with disabilities is not available either, said Sen. Louis DiPalma, D-Middletown. And, he added, there’s only one public transit stop in Tiverton.

Recently, the directors of the agencies responsible for services for the elderly and those with intellectual and developmental disabilities accompanied Avedesian on a paratransit run that picked up four individuals, one of them in a wheelchair, and took them to their various destinations.

Rebecca Boss, the director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), said it was a “really good experience for everyone to see the hands-on, labor-intensive type of transit that we perform.”

For the officials, the experience took two and a half hours, from the time the van left the RIPTA garage to get the first client until the time it returned, Avedesian and Boss agreed. It happened to be a day with a lot of traffic, Avedesian added.

Even though the clients weren’t on the van all that time, Kate Sherlock, a commission member, said the run took too long. “I cry when I have to be in the car for two hours,” she said.

Avedesian said that for him, the biggest takeaway from the experience was the need for matching the locations of clients and available jobs to minimize travel time, “so that we’re not taking someone all the way from Woonsocket to Newport.”

Avedesian said he’s impressed by the “intensive amount of time, money and labor involved in moving one person from one end of the state to the other.”

DiPalma said the average cost of a paratransit run is $34, but the program is reimbursed roughly $8 to $14 of that cost, depending on the intensity of the client’s disability. He said the reimbursements are Medicaid-authorized federal and state transportation dollars assigned to BHDDH clients to cover travel. No public transit system in the country is financially self-sufficient, DiPalma noted.

DiPalma has convened an informal group of representatives of public and private agencies who are interested in solving the transportation problems of people with disabilities. The agencies include BHDDH , DLT, RIPTA, the Community Provider Network of Rhode Island, the Providence Chamber of Commerce, the office of U.S. Rep. James Langevin, and others, he said.

Moving forward, transportation must become more malleable to the needs of the people, he said. If someone lives in Glocester and has a job in Newport, that person may be able to get work closer to home, but “if that’s the job they have, that’s the job they have,” DiPalma said.

Jensen

Jensen of DLT offered a different way of looking at the transportation problem.

If people with developmental disabilities can be viewed as a source of excellent workers, rather than a population needing support, a stronger argument can be made for investing more in transportation, because of the value this group brings to the economy, he said.

“The company will be receiving value, the person will be paying income tax and can buy more things than they otherwise would,” Jensen said.

He said “coalitions of the willing” are “trying to find those positions where companies recognize the value of people with developmental disabilities. That takes time.”

He said a “handful” of companies, like Home Depot and CVS, have made the “moral choice” to employ individuals with developmental disabilities.

“We want to also help make this a practical choice” for many businesses, Jensen said, by starting with employers’ demands and finding the right match in the labor force - “the right person, in the right place, at the right time, and with the right skill set.”

BHDDH officials recently put the employment rate for adults with developmental disabilities at 29 percent.

Kalaskowski

Kalaskowski, of the Governor’s Workforce Board, said the state is promoting that strategy in the Real Pathways program, part of the broader Real Jobs initiative.

In Real Pathways, DLT works with private providers of employment-related services for adults with developmental disabilities, promoting collaboration among job developers to find the best match between the employer’s demand and worker skills.

A job developer working alone may not have just the right client and face the choice of either forcing a match that won’t work out in the long run or letting a relationship with an employer die, Kalaskowski said. In a network of job developers, one may pass along a lead to another and they will return the favor down the line, he said.

Andrew McQuaide, a senior director with Perspectives Corporation, said Jensen and his team deserve “a lot of credit” for fostering a culture of collaboration.

McQuaide recalled how one man with developmental disabilities connected with a training opportunity offered by the Rhode Island Nursery and Landscape Association because both he and AccessPoint’s Rory Carmody “spread the word.”

Then, when a job with a landscaping company opened up, someone in the community who knew the man from the RINLA training recommended him for the position. The man got the job “not because DLT put any dollars forward,” McQuaide said, but because of the “culture and the connections” that DLT promoted.

Boss, the BHDDH director, said she is excited about the collaboration with DLT. Tracey Cunningham, the director of employment services, and other dedicated officials at BHDDH do a good job in helping adults with developmental disabilities find work, but the staff at DLT “lives, eats and breathes” jobs, she said.

The next meeting of the Project Sustainability commission, set for June 25, has been cancelled because of likely schedule conflicts as the General Assembly wraps up its 2019 session, DiPalma said. He said the meeting will be re-scheduled sometime in July.

RI DD Rate Reviewers Asked To Fix Payment System That Still Promotes Segregated Care

By Gina Macris

This article was updated June 17 with a response from the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals.

The Rhode Island state agency which funds services for adults with developmental disabilities has acknowledged for the first time that its underlying reimbursement system for private providers is structurally deficient for complying with the Americans With Disabilities Act as required by a 2014 federal civil rights decree.

While the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) has pursued services promoting greater independence for adults with developmental disabilities, “the underlying reimbursement system has lagged,” according to a statement of the scope of work outlined for a consortium tasked with reviewing reimbursement rates.

The rate structure “is grounded in past practices and cost bases associated with the provision of services in the sheltered workshop setting,” BHDDH officials wrote.

“In order to adequately meet consumers’ needs, providers have been paid supplemental funds to address the deficiency in the payment rates,” BHDDH explained in the contract.

BHDDH has a contract with the New England States Consortium Systems Organization (NESCSO) to update a rate structure that has not been reviewed for eight years and to suggest alternates to the current payment methods.

In describing the work ahead for NESCSO, BHDDH says it is:

“seeking to further promote the development of a service system and associated reimbursement arrangements that maximize the opportunity for persons with DD to participate to the fullest possible in community-based activities.”

In 2014 the U.S. Department of Justice found that the reimbursement system incentivized segregated care in sheltered workshops and day centers in violation of the Integration Mandate of the ADA, reinforced by the U.S. Supreme Court in the Olmstead decision.

The Obama administration began vigorously enforcing the Olmstead decision in 2009, but the consent decree in Rhode Island was the first settlement that addressed segregation in daytime services rather than housing.

The consent decree provides a decade-long period of federal oversight of the state’s efforts to change the system. Enforcement of the consent decree entered its sixth year April 9. It will take at least another year for changes in rates and payment methods to go into effect, with the approval of the General Assembly. Enforcement of the decree is set to expire in 2024, but the state would have to show substantial compliance before federal oversight ends.

While some improvements in services have been made, the contract with NESCSO indicates that BHDDH officials believe the reimbursement system has held back compliance efforts.

Staffing Ratios Hinder Needed Flexibility

The underlying problem, said the BHDDH director in an interview, is a rule that requires a ratio of 60 percent funding for community-based activities and 40 percent funding for center-based daytime care in each client’s individual authorization.

The contract language alludes to this situation in describing staffing ratios. It says two areas of “particular focus” are daytime rates paid for employment-related and non-work services. In sheltered settings, for example, there might be one worker for every ten clients. But in the community the number of clients for each worker would have to be much smaller.

Rebecca Boss, the BHDDH director, said the department seeks a “predictable rate structure not driven by very precise ratios” but rather by the needs and preferences of individual clients.

The supplemental payments intended to mitigate the deficiencies in the underlying system “are an increasing portion of overall payments, reflecting the inadequacy of the current rates,” the contract language explained.

According to department officials, that language was meant to refer to the historical trend, in which supplemental payments had increased to as much as $7.8 million in a three-month period.

Boss froze new approvals at the end of 2017, except for emergency health and safety considerations and a couple other narrowly defined exceptions, to try to curb a multi-million dollar deficit at a time when Governor Gina Raimondo seemed inclined to cut developmental disability services significantly.

According to records BHDDH turns in to the General Assembly every month, the supplemental payments from January through March of this year have declined to $3.6 million, about half the total for the same period in 2018.

Historically, supplemental payments have been awarded only when consumers, families, or providers have made successful appeals of individual authorizations. The appeals, which often have required considerable time and energy, must be made annually, or the authorization reverts to the original amount. The appeals process is but one facet of what many families and providers describe as an unstable system.

Kerri Zanchi, director of the Division of Developmental Disabilities, said supplemental payments are still a big part of reimbursements to private providers, and BHDDH wants NESCSO and its consultants to scrutinize them as part of the review process.

Study Commission To Hear from NESCSO

The rate review coincides with the work of a special legislative commission studying the current reimbursement system, called Project Sustainability.

On June 18, the commission will meet to hear presentations about employment and transportation issues from Scott Jensen, director of the Department of Labor and Training; and from Scott Avedesian, CEO of the Rhode Island Public Transit Authority.

On June 25, the executive director of NESCSO, Elena Nicolella, is scheduled to appear before the commission to give an update on the rate review now being conducted by four consultants under NESCSO’s supervision.

In the meantime, some commission members have given BHDDH their own statements on how they think consultants should approach the work and their ideas for a new system of services that allow consumers and their families to shape the way state funds are used.

A spokeswoman for providers has urged NESCSO and its consultants to gain a thorough understanding of what it costs for a private agency to provide services under the terms of recently-revised regulations for provider operations and quality certification standards.

These bureaucratic steps are part of the state’s efforts to comply with the consent decree and the federal Medicaid Home And Community Based Final Rule (HCBS). Like the consent decree, HCBS embraces the integration mandate of the ADA, but it is a nationwide rule applying to all community-based services funded by Medicaid.

Paradox In Unspent Funds For Employment

Tina Spears, executive director of the Community Provider Network of Rhode Island, warned that simply looking at the way providers utilize the current reimbursement model, which is based on segregated care, will not give the complete picture of the needs of the system.

She did not mention specifics, but a case in point is the performance-based supported employment program, which was funded by a $6.8 million allocation made by the General Assembly in the fiscal year that began July 1, 2016. That allocation still has not been completely spent.

Excluding a start-up period from January through June of 2017, the program spent $2.5 million the first year, from July 1, 2017 through June 30, 2018. It’s expected to spend $4 million in the fiscal year ending June 30, according to a BHDDH spokesman.

Providers initially complained that they could not meet their costs with the series of one-time incentives offered by the program, which was built on same reimbursement system designed for center-based care.

Incentives and enhancements were made more generous during the second year, and negotiations are underway for a third year of the program.

In the meantime, Rhode Island’s last sheltered workshop closed last year and BHDDH says community-based, competitive employment has increased to about 29 percent of adults with developmental disabilities.

A study released by two nationwide associations of providers in January said Rhode Island’s rate of competitive employment was about 19 percent, but that figure dated from 2015. The “Case for Inclusion” ranked Rhode Island 32nd in the nation on its integration efforts. It was compiled by ANCOR - the American Network of Community Options and Resources, and UCP – United Cerebral Palsy.

Consumers Want More Control Over Money Assigned To Them

Kevin Nerney, executive director of the Rhode Island Developmental Disabilities Council, and Kelly Donovan, who receives state-funded supports, each called for a system that allows greater consumer control of state funding and greater flexibility in the way it is used.

The state should “ensure that funding is available across all imaginable living arrangements,” particularly in situations where a consumer owns or rents a property and a caregiver or family would like to move in. The caregiver or consumer should be allowed a stipend, as is permitted in many other states, to make this type of arrangement viable, Nerney said.

The state should also ensure that adults with developmental disabilities have the support of familiar staff while they are hospitalized to avoid the trauma of being in an unfamiliar environment where they can neither make themselves understood nor understand what is being said to them, Nerney said.

In addition, the state should adopt a way to assess the support a person receives from family or friends in deciding funding levels. While most of those receiving services from the Division of Developmental Disabilities live in the family home, that home may include a large healthy family, a single aging parent, or a grandparent with Alzheimer’s and a sibling who also has significant needs for support, Nerney said.

And he called for more funding for those hired by self-directed consumers and their families to write support plans necessary to qualify for state funding. The expectations for the plan writers have multiplied over the last 20 years but the fees remains the same at $500 for the initial plan and $350 for an annual renewal, Nerney said. There should be an allowance for self-directed families who need ongoing coordination of services, he said.

Kelly Donovan, who herself receives services from BHDDH gave a concrete example of what greater control and flexibility might look like.

She said people should be able to enjoy an outing without:

A: going home early because a staffer’s shift ends

B: taking everyone in your group home with you, even if one or more of them really didn’t want to come.

“People should be able to have their designated time to themselves and opportunities to be involved in community activities,” she said.

The public may submit comments or questions about the rate review process by email at BHDDH.AskDD@bhddh.ri.gov. Please copy and paste the email address into your email program, or get a link by visiting http://www.bhddh.ri.gov/developmentaldisabilities/community_forums_event.php

In response to this article, Randal Edgar, a spokesman for BHDDH, released the following statement on June 17:

The article published on June 12 on the Olmstead Updates blog presents a misleading picture of Rhode Island’s system of care for adults with developmental disabilities.

The headline claims this system “promotes segregated care.”

This assertion is false.

The article attempts to back up this assertion up by referring to language in a state contract with a consultant that is reviewing the rates paid to DD providers. But in referencing the contract language, the article misreads the intent of that language.

The contract language speaks from a historical perspective. It states that while the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals has pursued the development of “a services system that supports greater independence” for the DD population, “the underlying reimbursement system has lagged.” It goes on to say that the “basis for the development of prevailing rates is grounded in past practices and cost bases associated with the provision of services in the sheltered workshop setting.”

Acknowledging that the existing rates are grounded in past practices and need to be updated is not the same as saying the system as it operates today promotes segregated care, and in saying it does, the article ignores and/or minimizes many steps the department has taken to improve the care provided to adults with developmental disabilities. It should be noted that the reporter met with BHDDH officials for more than an hour but did not press this assertion and obtain their view of the contract language.

The article is wrong again when it states that department froze new approvals for supplemental payments in 2017 to help offset a budget deficit. The department reduced those approvals, applying more stringent standards, not because of a possible budget deficit but because this made sense from a policy standpoint.

Finally, the article gives voice to people outside the department, asking them to describe where the DD care system should go, without giving BHDDH officials a chance to share their vision. In the process, it conveys a false impression that BHDDH officials are not passionate about moving this system forward.

We are disappointed that the article did not present a more complete and accurate picture.

Separately, the public may submit comments or questions about the rate review process by email at BHDDH.AskDD@bhddh.ri.gov. Please copy and paste the email address into your email program, or get a link by visiting http://www.bhddh.ri.gov/developmentaldisabilities/community_forums_event.php

RI “Not Far” From Institutional System Of DD Services, Antosh Tells Legislative Commission

A. Anthony Antosh

By Gina Macris

Other than moving people out of institutional living with the closing of the Ladd School in 1994, Rhode Island hasn’t made life appreciably better for adults with developmental disabilities, according to state’s most prominent academic in the field.

A. Anthony Antosh, director of the Sherlock Center on Disabilities at Rhode Island College, said that every week he gets calls from parents who say how “complicated it has gotten” to deal with state-funded services and “how unstable the system is.”

“Our system is not institutional, but it’s not far from that,” Antosh said. He has been active as an educator and researcher in the field of developmental disabilities since the 1970s and was a plaintiff in a lawsuit that ultimately closed the Ladd School.

If the state transfers control of its services – even partially -- to the people who are served, “you begin to change what the system looks like,” he said. Individuals will become “more responsible for themselves.”

Antosh made the comments May 22 as a member of the Project Sustainability Commission, a special legislative commission studying the current state of developmental disability services. Antosh and other commissioners outlined their reform suggestions at the session.

He zeroed in on a requirement now in place that sets out ratios for staffing according to the degree to which a person is perceived to be disabled – a “naive notion” in his view. The ratios allow one-to-one or small group staffing only for the most challenged individuals and were designed for day care facilities or sheltered workshops.

The funding rule remains in place even though the state in April entered the sixth year of a ten-year agreement with the U.S. Department of Justice requiring it to change to an integrated, community-based system of care. The last sheltered workshop in Rhode Island closed last year.

Antosh said an alternative structure could be a community support team responsible for a certain number of people. The team would figure out how to arrange its time to meet the individual needs of its clients in the community.

DD Council Weighs In

Kevin Nerney, executive director of the Rhode Island Developmental Disabilities Council, also said that he wanted a system “driven by the person and the family.”

There is much talk about “person-centered planning,” he said, but “sometimes, the person is at the center and the other people are doing the planning.”

Nerney recommended that the person receiving services and the family take the lead in drawing up a plan for life in the community. They would be guided by an independent facilitator, not by someone who works for the state funding agency or a private service provider.

The individual and the family would have control over the budget assigned to them and would be able to hire whom they choose to provide paid supports.

Until recently, Nerney said, individuals and families who direct their own services were allowed to use the money allotted to them only to pay for support workers.

Those who choose to receive services from an agency should at least know how much money goes into each category of support, Nerney said.

Antosh, meanwhile, said that funding should be organized by function so that individuals and families have a clearer idea of its purpose.

The notion that plan-making and case management should be separated from the funding agency and the service provider is already embedded in federal Medicaid rules under the title of “conflict free case management.”

“Health Home” Merits Debated

The state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) wants to set up a Medicaid-funded “Health Home” as an independent planning and case management entity for persons with developmental disabilities.

But some commission members have wondered aloud whether a Health Home would be just another layer of bureaucracy.

And Nerney said most people don’t even like the term “conflict-free case management.”

Antosh agreed that “conflict-free case management” should be made simple. The state should have a list of trained independent facilitators, or “navigators,” as he referred to them, to help individuals and families develop plans and mediate any differences among those contributing to an individual plan.

Individuals and families should have a choice of managing their own services, signing up with an agency, or designing a customized combination of self-directed supports and agency-managed services, he said.

Tom Kane, Left, With Antosh

Tom Kane, who represented a service provider’s perspective, agreed that the people should be in control, with the services following their needs.

To lay the groundwork for real choice, the system should help adults with developmental disabilities “discover their options,” and providers should follow their lead in delivering services, said Kane, CEO of AccessPoint RI.

Kane recommended a concerted statewide marketing campaign aimed at employers that promotes adults with developmental disabilities as an enthusiastic and reliable workforce.

Several other recommendations from Kane echoed recurring issues among members of the commission including:

• A need for funding that reflects the real costs of services, as well as salaries that will attract and retain talented employees. Recommendations that arise from the review of the funding model and rates that is now underway should be presented to the General Assembly “without edit,” Kane said, and should be used as the basis of funding a new system. He noted that the last review came up with recommendations which the legislature never used.

• Concerns about a lack of housing options

• A need for consumers’ access to technology to help them achieve the greatest independence possible.

A Call For A More Stable Funding Cycle

All the commission members, except Antosh, favor annualized budgets for individuals. Antosh said arrangements should be made in two-year increments for funding and services. He also said that there should be a single streamlined application process, no matter the source of the funding, which may come from BHDDH, the Office of Rehabilitative Services, or the Department of Labor and Training.

Families of youngsters deemed eligible for adult services while they are still in high school should also get a budget for exploratory activities, because they don’t know what choices are possible until they experience various options, he said.

The state now determines funding levels annually on paper but reserves the right to change the amount actually released for spending every three months – on a quarterly basis. Families and providers agree that the quarterly allocation - the only one like it in the nation – is a major impediment to the systematic planning necessary for a stable system of supports.

Kane provided some history on the quarterly allocations:

In 2010, he said, payments to private service providers ran over budget and the state told them their reimbursements would be cut for two months – one month retroactively – to make up the difference.

Some providers sued, Kane said, arguing that the state was still obliged to fulfill its contract with them. The providers won, but the next year, in 2011, BHDDH introduced quarterly allocations along with Project Sustainability, the fee-for-service system that significantly reduced reimbursements and is at the center of the commission’s deliberations.

Mental Health Services Lag

The issue of mental health received considerable attention, with Nerney recommending that the system develop and implement a variety of strategies to prevent crises or resolve them once they occur.

Nerney supported the idea of a mobile crisis unit that he said was suggested by Gloria Quinn, Executive Director of West Bay Residential Services, at the previous commission meeting May 6.

Quinn recommended convening a group to explore successful practices in supporting those with complex mental health and behavioral needs in the community, minimizing the need for excessive psychiatric hospitalization.

Rebecca Boss, the BHDDH executive director, and Kerri Zanchi, the Director of the Division of Developmental Disabilities, both indicated they are aware of a need for greater support and intervention in the area of behavioral health for persons with developmental disabilities.

“We don’t have a good handle on the needs of families in crisis,” Zanchi said.

The assessment tool that BHDDH uses to determine funding levels, the Supports Intensity Scale (SIS), garnered a new round of criticism, despite efforts in 2016 to reframe the questions it asks to better identify support needs and the re-training of all the social workers who conduct the highly scripted interviews..

L To R, Kerri ZanCHI, Brian Gosselin, Acting Consent Decree Coordinator; Christopher Semonelli, Peter Quattromani. All Are Commission Members

Critic Says Assessment Method Is “Demeaning”

Peter Quattromani, executive director of United Cerebral Palsy RI and spokesman for the Providers Council, said the state should return to using the Personal Capacity Inventory to identify funding needs because it reflects a more collaborative approach than the SIS.

Quattromani said he sat in on several SIS interviews and found the SIS to be a “very demeaning experience” with “very intrusive questions.” In some cases the interview varied, depending on who was asking the questions, he said.

Antosh said when parents experience the SIS for the first time, “they are absolutely horrified by it.”

He suggested that when the SIS was first piloted, it was not intrusive. It was “a conversation”, albeit a lengthy one, lasting for or five hours, Antosh said. Afterward the responses were correlated with funding needs.

Antosh said the SIS was designed to help professionals develop support plans, not as a funding tool, even though Rhode Island and other states use it that way.

Antosh said he would recommend that Rhode Island design its own assessment tool, not necessarily eliminating the SIS but using multiple factors to determine funding, including an exploration of behavioral health issues and other areas not covered in the SIS.

Heather Mincey, assistant director of the Division of Developmental Disabilities, said not all the comments abut the SIS process she has received from families have been negative, with some parents saying it “wasn’t all that bad.”

The May 22 meeting concluded individual members’ presentations on recommendations for change, which will be reviewed and consolidated along common themes and incorporated into a plan for moving forward, said the Commission chairman, Sen. Louis DiPalma, D-Middletown.

He said he anticipated a five-year process for implementation, with the aim of making Rhode Island achieve top national ranking among state systems of developmental disability services.

In the meantime, DiPalma said that he next commission meeting, on June 18, will feature remarks by the state Director of Labor and Training, Scott R. Jensen; and the CEO of the Rhode Island Public Transit Authority, Scott Avedesian Employment and transportation are two topics that have sparked a lot of complaints, DiPalma said. He said he expects the commission to continue meeting into July.

"Project Sustainability” Commission To Continue Hearing Members’ Recommendations May 22

By Gina Macris

Members of a special legislative commission studying Rhode Island’s funding of services for adults with developmental disabilities are expected to finish presenting their recommendations for change at the commission’s next meeting Wednesday, May 22, according to the chairman, Sen. Louis DiPalma.

The recommendations which have been aired coalesce around a vision of a future in which adults with developmental disabilities get the supports they need to live where they want, find a job, and do what they want in their spare time, just like anyone else, in keeping with the integration mandate of the Americans With Disabilities Act. That mandate is reflected both in the Medicaid Home and Community Based Rule (HCBS) and the 2014 federal consent decree between the state and the U.S. Department of Justice.

To realize an inclusive future, it is critical that the state adopt an alternative to the current fee-for-service funding model, which poses “challenges and barriers” for the for the privately-run system of developmental disability services, DiPalma said.

The state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) has begun a review of the rates and the rate model for paying private providers and invites public comment by email at this address: BHDDH.AskDD@bhddh.ri.gov (Please copy and paste the email address.)

DiPalma said commission members have submitted comments on the rate review to BHDDH. In addition, the recommendations aired so far have sounded some common themes, including a need for better transportation and a desire for a seamless bureaucracy that can meet the needs of individuals at all stages of life, DiPalma said.

The transition between special education services in high school and the adult service system has been compared to “falling off a cliff” by many parents, according to anecdotal reports to the commission.

DiPalma said he will ask RIPTA, the Rhode Island Public Transit Authority, and the Department of Labor and Training to become directly involved in efforts to redesign the developmental disabilities service system. The consent decree, which resulted in the elimination of sheltered workshops in Rhode Island, calls on the state to increase supports to adults with developmental disabilities seeking jobs in the community.

The May 22 commission meeting will begin at 2 p.m. in the Senate Lounge at the State House.

RI DD System Needs Stable Funding For Quality Services and Productive Lives - Commission

By Gina Macris

A successful model for funding Rhode Island’s developmental disability services would be more complex than simply increasing workers’ wages, members of a special legislative commission agreed at a meeting May 6.

Kelly Donovan, a commission member who herself receives services, said the work of the support person is “not a job; it’s a commitment.“

In a high-quality system of services, Donovan said, direct support professionals and the people they serve have a relationship. They develop strong bonds.

The discussion nevertheless returned repeatedly to the lack of funding that permeates the system, with rules that commission members say make it rigid and unresponsive to those needing services.

Peter Quattromani, CEO of United Cerebral Palsy of Rhode Island, said agencies that ask their employees to “ commit” to the persons they serve also require them to commit themselves to “a life of poverty” because employers, dependent on state funding, can’t pay salaries commensurate with professional work.

As a result, Quattromani said, the agencies are hiring “very temporary employees.”

“We don’t appreciate what it takes on the part of the individual to turn their life over to a staff person,” Quattromani said. Every time there’s turnover, there’s a new intrusion in that person’s life, he said.

The CEO of West Bay Residential Services, Gloria Quinn, said “I can think of examples when people go along with people and don’t know them. It gets complicated to do the right thing at the right time.”

But West Bay Residential has an annual staff turnover rate of 34 percent and a job vacancy rate of 15 percent, said Quinn, who recommended a system that is adequately funding, “including appropriate compensation for a well-trained workforce.”

At the same time, she said, there are employees who are doing an “incredibly important and skillful job” even without the compensation they deserve.

Sen. Louis DiPalma, D-Middletown, the commission chairman, said there is a great disparity in pay in two parallel systems of services.

“We do value the profession” of supporting adults with developmental disabilities, he said, as long as it is the state-operated network of group homes and facilities called RICLAS, short for Rhode Island Community Living and Supports. But private providers, who perform the same direct support work, are not valued, DiPalma said, referring to the state’s chronic underfunding of these agencies.

He said he never saw the situation quite that way until Tom Kane, CEO of AccessPoint RI, framed it in those terms during a recent budget hearing before the Senate Finance Committee.

RICLAS workers start at about $18 an hour, while entry-level workers in the private system average about $11.40 an hour. On an annual basis, the starting salary at RICLAS is $37,291, according to a spokeswoman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH). As state employees, RICLAS workers also get a full package of benefits.

DiPalma said that when the current fee-for-service reimbursement model was enacted by the General Assembly in 2011, the “right questions weren’t asked. We can’t let that happen again.”

He said he firmly believes that today, all legislators would say they value the work done in supporting adults with developmental disabilities, but “the critical thing is ‘how do we get there’? “ He alluded to a reimbursement model in which wages reflect the value of the work.

In Kelly Donovan’s vision of the future, adults with developmental disabilities will receive training and support in making their own decisions in an informed manner. And support persons will respect those decisions, she said.

Kate Sherlock, a commission member and lawyer with the Rhode Island Disability Law Center, concurred.

For a long time, the role of the staff person has been to “speak up for people,” she said. Instead, staff should facilitate decisions made by clients.

But clients “do not have the real opportunity to decide what they want, because there are not enough options,” Sherlock said. Decisions should not be “either-or,” she said. “It shouldn’t be ‘do you want chocolate or vanilla ice cream.’ “

“People want to live with people they choose. They want a job they like and they want to make a decent amount of money,” Sherlock said.

Enabling clients to make meaningful decisions about belonging to their communities and engaging in activities they want, as well as giving them the opportunity to eat healthy foods and be active and fit will at the same time elevate the staff role into a position that can have greater impact and be more desirable – even fun, Sherlock said.

The Disability Law Center supports a bill that would give legal standing to adults who support those who need assistance in decision-making, Sherlock said, but the measure is encountering difficulties in the Senate. DiPalma said he would look into it.

Commission members agree that Rhode Island needs to abandon its fee-for-service reimbursement system in favor of one that gives clients an annual budget with flexibility to spend it on what they want and need to enable them to live regular lives in their communities, in accordance with a 2014 consent decree and federal Medicaid rules reinforcing the Integration mandate of the Americans With Disabilities Act (ADA).

Not only is the current system under-funded but it is saddled by rules that make it too restrictive, they say.

Among the needs discussed May 6 are funding for:

• training and career paths for staffers

• Technology, such as smart phones and other devices and software, that can help clients become more independent from staff.

• ·Easier access to transportation, which might include Uber and Lyft options to lessen clients’ dependence on staff time, which can be better used providing other types of supports

• Better access to affordable housing

• More intensive community-based mental health services that can prevent psychiatric hospitalizations.

In addition, the developmental disabilities caseload must be counted in a way that better informs budget makers, according to Quinn, the CEO of West Bay Residential Services.

All the recommendations which members have presented through May 6 can be found here .

The next meeting will be May 22, when commission members are expected to continue presenting their recommendations.

RI BHDDH Wants Consultants' Comprehensive ‘Best Strategies’ For Integrated DD System

By Gina Macris

The most recent meeting of Rhode Island’s “Project Sustainability” commission Aoril 25 left members surprised by news that an outside review of Rhode Island’s rates and reimbursement methods for private providers of developmental disability services will not conclude with consultants making dollars-and-cents recommendations for a new scale of payments.

In a follow-up question, Developmental Disability News asked officials of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) to elaborate on the reasons for the approach it has taken in commissioning the outside review, which is intended to help the state meet the requirements of a 2014 federal civil rights decree..

In a statement, a spokesman said the department is looking for the “best strategies” for developing and paying for an “integrated and individualized system of services” - characteristics which would comply with the consent decree.

That decree draws on the authority of the U.S. Supreme Court’s Olmstead decision, which reinforced the integration mandate of the Americans With Disabilities Act.

The existing reimbursement system for private agencies led to over-reliance on facility-based care and sheltered workshop employment, in violation of the integration mandate, according to findings of the U.S. Department of Justice, which laid the groundwork for the consent decree. The fee-for-service reimbursement system, called Project Sustainability, resulted to significant pay cuts for direct care workers, high turnover and a high rate of job vacancy.

“Determining how to stabilize the workforce and what to pay direct care workers is a broad question that touches on many moving parts,” said Randal Edgar, the BHDDH spokesman.

The salary of workers, called “direct support professionals,” is an important part of the rate structure, but there are other costs which are “vital to a provider’s enhanced functioning,” Edgar said. He listed these costs:

• employee benefits

• training

• supervision

• management capacity

• information technology

• connection and liaison with community

“Asking the consultants to determine just one of the vital elements would not meet the overall financial needs of the Rhode Island Developmental Disabilities system. We are looking for the consultant to identify best strategies for providing an integrated and individualized system of services and help us develop best strategies to pay for that system. But we do not think it is the consultant’s job to say what direct care workers should be paid,” Edgar said.

Anyone who has questions about the rate review may submit them to BHDDH.AskDD@bhddh.ri.gov, Edgar said. (Please copy and paste the email address.)

Meanwhile, the special legislative commission studying Project Sustainability will meet Monday at 2 p.m. in the Senate Lounge of the State House, according to its chairman, Sen. Louis DiPalma, D-Middletown.

DiPalma said the session will focus on members’ recommendations for changes to better enable adults with developmental disabilities to live the lives they want with the supports they need.

NESCSO Review of RI DD Reimbursement Won’t Generate Specific New Rate Recommendations

By Gina Macris

Elena Nicolella and Rick Jacobson All Photos By Anne Peters

The non-profit consortium hired to review the reimbursements Rhode Island pays private agencies serving adults with developmental disabilities will not produce a new set of recommended rates, its executive director said April 25.

Rather, consultants supervised by the consortium will review the impact of the existing system and present facts and data that will enable the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) to make more informed policy decisions, based on available funding and other factors, said Elena Nicolella. She is executive director of NESCSO, the New England States Consortium Systems Organization.

Nicolella addressed a special legislative commission studying the current fee-for-service rate structure, called Project Sustainability.

DiPalma and Kelly Donovan, A Consumer Advocate

For more than an hour, the commission chairman, Sen. Louis DiPalma, D-Middletown, and other members of the panel peppered Nicolella and consultant Rick Jacobson with questions as they struggled to come up with a clearer idea of what NESCSO’s recommendations might look like.

The pair, aided by BHDDH officials, did flesh out the picture somewhat. But DiPalma, said Nicolella will be invited back in June to give an update on the work, which is underway.

“We will not be issuing recommendations on specific rates,” Nicolella said, explaining that is not within the scope of the work outlined in the contract between NESCSO and BHDDH.

The work will assess current rates quantitatively and qualitatively and analyze “the impact of the rate structure and payment methodology on people receiving services and the provider agencies and make recommendations for the future,” Nicolella said.

NESCSO will develop scenarios or “roadmaps” of what it would take for the state to achieve certain goals, putting the priority on the state’s obligation to meet the requirements of a 2014 civil rights consent decree with the federal government. That means the work will focus on day services and employment supports, at least initially, Nicolella said.

Some of the recommendations, however, will have implications for the entire system of services, she said.

Rebecca Boss, the BHDDH director, gave an example of one system-wide priority – creating a stable workforce.

She was asked after the meeting why BHDDH structured the work the way it did.

Boss reiterated that NESCSO would present “facts and data” in an analysis based on certain assumptions. She and Nicolella said the policy decisions would be up to BHDDH.

“If the decisions we make (at BHDDH) don’t meet expectations, it will be out there,” Boss said, emphasizing that the work will be transparent.

The assumption at the heart of Project Sustainability was that providers could do the same work with less money. A former BHDDH administration relayed that assumption to the General Assembly in an unsigned memo that contained a slew of reimbursement rate reductions that formed the basis for cuts enacted in 2011 to inaugurate Project Sustainability. The reductions averaged 17 percent.

Boss said “that’s not the kind of assumption we’re talking about.” Instead, the assumption for one analysis might be that industry-wide, providers should have health insurance for their employees, Boss said. Another assumption might be the amount it costs providers to cover employee-related overhead, she said.

In a separate conversation outside the meeting, Nicolella said the recommendations would be “driven by the data” and “not limited by the by the state budget.”

At the same time, NESCSO will “stop short of what was recommended last time,” she said, alluding to the specificity of rates proposed by Burns & Associates, healthcare consultants who worked on Project Sustainability.

In 2011, Burns & Associates recommended rates that would have paid entry-level workers nearly $14 an hour, but after the General Assembly cut $26 million from developmental disability funding, many workers ended up at minimum wage.

Since then, wages have increased only incrementally, resulting in high turnover and job vacancy. Providers say the reimbursement rates do not cover their actual employee-related costs, like payroll taxes, health insurance, and the like.

During the meeting, Nicolella assured a spokeswoman for providers that the rate review will look at the agencies’ figures. At least one agency, Spurwink RI, has laid out its gap in dollars and cents several times before the House Finance Committee.

At the commission meeting, Spurwink’s executive director, Regina Hayes, asked Nicolella and Jacobson whether the review would pay attention to compatibility with current law.

For example, she said, the Affordable Care Act requires employers to pay health insurance for workers who put in at least 30 hours a week. But Project Sustainability assumes that only those working 40 hours a week are entitled to health insurance, Hayes said.

Nicolella responded, “That’s exactly the kind of information we should be hearing right now, because it’s extremely helpful.”

She and Jacobson both said the assessment of the impact of the current system will include engagement with consumers and families,as well as providers. But neither of them could lay out a schedule or format for that type of engagement.

NESCSO is required to produce a series of reports for BHDDH between June and December, she said. It is the consortium’s intent to complete the work in time for BHDDH to make its budget request for the fiscal year beginning July 1, 2020, Nicolella said.

Nicolella explained that NESCSO’s only mission is to serve the New England states as they seek to research issues and solve problems in the fields of health and human services.

“We are not a consulting company. We don’t sell our services,” she said.

In this case, NESCSO is overseeing four outside consultants, including Jacobson, who are doing the actual work.

NESCSO’s board of directors includes health and human services officials from five of the six New England states, according to its website. Only Maine is not listed as a member.

Nicolella said Rhode Island’s designated board member is Patrick Tigue, the Medicaid director. (Nicolella herself is a former Rhode Island Medicaid director.)

The consortium’s two sources of revenue are state dues and proceeds from a national conference. The BHDDH review is a member benefit, Nicolella said. The contract encompasses not only the work on developmental disabilities but a review of rates for behavioral healthcare services and a model for outpatient services for patients of Eleanor Slater Hospital. But the state still must pay for the consultants’ work - $1.3 million over an 18-month period.

Ongoing RI DD Rate Review To Be Aired Thursday At Project Sustainability Commission Meeting

By Gina Macris

Elena Nicolella, executive director of a non-profit consortium overseeing a review of the rates Rhode Island pays private providers for services to adults wlth developmental disabilities, will address the Project Sustainability Commission Thursday, April 25.

Sen. Louis DiPalma, D-Middletown, the commission chairman, said Nicolella will explain the scope of the work, the timetable, and the documentation that is required under the terms of the consortium’s contract with the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

Nicolella is executive director of the New England States Consortium Systems Organization (NESCSO), a non-profit collaboration involving five of the six New England states that aims to promote policies and programs that will serve the needs of the region in a cost-effective manner, according to its website. Only Maine does not belong to the regional group.

DiPalma said he expects that “everything will be on the table” about Project Sustainability, the fee-for-service payment system which providers say hamstrings their ability to offer integrated services in the community as required by a 2014 federal consent decree.

Project Sustainability, enacted by the General Assembly in 2011, forced providers to cut workers’ pay to minimum wage levels, wiping out established career ladders that helped bring continuity to the care of adults with developmental disabilities.

In November, Mark Podrazik, the consultant who advised the state in planning Project Sustainability, told DiPalma’s commission that reimbursement rates should be reviewed every five years.

Thursday’s Project Sustainability Commission meeting featuring Nicolella will begin at 2 p.m. in the Senate Lounge at the State House, according to DiPalma.

NESCSO has a $1.3 million contract with BHDDH over an 18-month period to review private provider rates for developmental disabilities and behavioral healthcare service. The contract also calls on NESCSO to provide technical assistance in connection with creating out-patient services for patients of Eleanor Slater Hospital.

The work in developmental disabilities represents about $700,000 of that total, according to a BHDDH spokeswoman.

RI DD Funding System Harms Quality Of Life, Advocates Tell House Finance Subcommittee

By Gina Macris

Anxiety, frustration, and fear permeate the lives of adults facing the daily challenges of developmental disabilities, and by extension, the lives of families and caregivers who support them, say numerous Rhode Islanders who wrote to members of the House Finance Committee recently to explain the human effects of chronically underfunded services.

“The person receiving support grieves and is forced to live in a state of perpetual frustration” because of missed opportunities resulting from staff shortages, wrote Diane Scott, who has worked 29 years at West Bay Residential Services. Likewise, “the impact on employee morale is a palpable anxiety and frustration,” Scott said.

Howard Cohen * Photo by Anne Peters

Jacob Cohen has had to begin taking a “significant regimen of medication to control his anxiety so he could deal with his daily life,” wrote his parents, Howard and Patricia Cohen of North Kingstown. They said it has been “heartbreaking” to watch him lose control of his daily activities as funding has shrunk over the last decade.

The letters from Scott, the Cohens, and others served as written testimony in a March 28 budget hearing on the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) before the House Finance Subcommittee on Human Services, chaired by Rep. Alex Marszalkowski, D-Cumberland.

And some of concerns expressed before the finance subcommittee about the quality of care overlapped with remarks made a few hours earlier the same day before a special legislative commission studying the state’s fee-for-service reimbursement system for private developmental disability services, Project Sustainability.

Another letter writer, Holly Walker said she knows a client of AccessPointRI who spends every Monday morning telling everyone how upset she is that she missed Sunday church services – again – because there was no one available to take her.G

A Warwick mother, Pam Goes, wrote that frequent change of staff has increased her own fears about the safety of her non-verbal son.

“Staff who don’t know him struggle to know what he needs, at home and in the community. He is unable to tell them when he is sick, when something hurts, when he is afraid. And my fears are increased as well,” Goes wrote.

Two other mothers, Lisa Rego and Claudia Swiader, asked members of the Finance Committee “to put themselves in the shoes of the parents and families of individuals with a developmental disability.”

“Wouldn’t you want to know that your loved one was being cared for by someone who wanted to be there? Wouldn’t you want to know that your loved one was receiving the support they needed to keep them safe, healthy and happy?” wrote Rego and Swiader, president and vice president, respectively, of the Autism Society of Rhode Island.

Scott, the veteran caregiver at West Bay Residential Services, reminded legislators that “any Rhode Island citizen may be one injury or disease away from needing support for a disability.”

The children and families of workers also suffer the consequences of inadequate funding, others said.

Brandi Ekwegh of Cumberland, a former manager of an AccessPoint group home and a single parent, described missing her tween-aged daughter’s concerts and award ceremonies and even leaving her home alone at 2 a.m. because there was no one else to de-escalate a client’s behavioral outburst at work.

When her daughter said she spent more time with her clients than with her, Ekwegh said, “I was crushed but she was absolutely correct.”

Disabled Have Civil Right To Services

By any measure, caring for adults with developmental disabilities is costly, but the integration mandate of the Americans With Disabilities Act also entitles them to services that allow them to access their communities for competitive employment and leisure activities of their own choosing.

The currently enacted budget for the state Division of Developmental Disabilities (DDD) totals $271.7 million in federal and state Medicaid money and miscellaneous other funds. Governor Gina Raimondo would add another $9.2 million to that bottom line, for an overall $280.9 million, to erase an existing deficit and pay for services during the fiscal year beginning July 1.

About $1.6 million in savings taken from the state-operated group home system, Rhode Island Community Living and Supports, would boost funding for privately-run services by $11 million over the next 15 months, according to information presented by the House Fiscal Office.

Within the $11 million total increase, Raimondo would set aside $6.4 million in Medicaid funds, including $3 million in state revenue, to raise the wages of front-line developmental disability staff by an estimated 34 to 41 cents an hour, depending on who’s drafting the projection.

Providers, Families, Seek $28.5 Million For Wages

Many of the letter-writers urged the Finance Committee to hike the state’s commitment for wages to $28.5 million, so that employers can meet unfunded overhead expenses in addition to passing along a wage increase to all their employees. Every Medicaid dollar the state spends generates a little more than a dollar in the federal Medicaid match.

As it now stands, the governor’s proposed increase would apply only to front-line workers, who typically make roughly $1 to $2 above minimum wage, if that.

In a letter to Marszalkowski , the subcommittee chairman, Kevin McHale, an administrator at AccessPoint, wrote that the average direct care worker at his agency makes $10.77 an hour, only slightly above minimum wage.

McHale, once a direct care worker himself, recalled that in 1987, the General Assembly voted to make a “substantial investment” in the private provider system by raising the pay of direct care workers to $7 an hour, about 90 percent above minimum wage, which was then $3.65 an hour.

At a time when the state was preparing to close the Ladd School, its only institution for persons with developmental disabilities, “this investment was seen as an intentional statement on the importance and value of the vital and challenging (yet rewarding) work that direct support professionals perform,” McHale wrote.

Today, private service providers operate at a loss for each person they employ, they say.

Regina C. Hayes, executive director of Spurwink RI, provided the committee with tables showing that the state funds a fulltime direct care position at $34,454, including an allowance of 35 percent of wages for employee-related expenses. But that figure is almost $9,900 per-person less than what it costs Spurwink for mandatory taxes, vacation, sick and holiday pay and health insurance, Hayes said.

The percentage the state pays for employee-related overhead is set through “Project Sustainability,” the controversial fee-for-service system enacted by the General Assembly in 2011.

Howard and Patricia Cohen, Jacob’s parents, say that Project Sustainability has harmed their son. The change in reimbursement methods “masqueraded as an improvement but in effect was merely a way to reduce costs,” they wrote.

Those already receiving services are not the only ones affected by the budget constraints.

Agencies Can’t Afford New Clients

Linda Ward, executive director of Opportunities Unlimited, a service provider, said that current funding and staffing situation makes it difficult for her agency to take on new clients or launch new initiatives.

Opportunities Unlimited recently had to “step back” from plans to develop a home designed to meet the significant psychiatric and behavioral needs of four women, Ward said.

Her testimony echoed comments made earlier in the day by Gloria Quinn, executive director of West Bay Residential Services, who addressed the special legislative commission studying Project Sustainability.

Families of young people aging out of the special education system often struggle to find agencies that are able to provide services for their sons or daughters, she said.

“We can’t find the staff”, said Quinn, a commission member. An agency’s ability to respond to the demands of the community is at its heart “a wage issue,” she said.

Andrew McQuaide, a senior director at the Perspectives Corporation, called the situation “self-directed by default,” meaning that parents who may not otherwise chose to do so are left to manage their loved ones’ individual programs because they can’t find an agency to provide appropriate services.

McQuaide, another member of the Project Sustainability commission, said that so-called self-directed families are having the same problems as the agencies in hiring direct care workers, but the families are doing it “without support.”

At the commission meeting, Barbara Burns said she recently decided to do a self-directed program of day services for her sister, not because she wants to do it but because it was the only way she could get respite care. Burns’ sister has Down syndrome and Alzheimer’s disease and lives with her on Aquidneck Island.

A proposal in the governor’s budget would create an “independent provider” model of care through the Executive Office of Human Services with a single fiscal intermediary to give those needing services at home broader choice in selecting caregivers.

The independent provider model also would give BHDDH the option selecting one fiscal agent to manage the accounts of self-directed families of adults with developmental disabilities, Linda Haley, a House fiscal advisor, told the finance subcommittee.

The prospect of unwanted change has worried some families, but a BHDDH spokesman said April 1 that DDD will continue with five fiscal intermediaries in accordance with its regulations, as well as a desire to give consumers choice.

Burns, meanwhile, said there should be a single state bureaucracy to address the needs of people with developmental disabilities, whether they are children in school, healthy adults, or people facing chronic illness or the end of life. Families face enough challenges caring for a special child, she said.

Semonelli * image courtesy of capitol tv

Christopher Semonelli, vice president of Rhode Island Families Organized for Change and Empowerment (RIFORCE) , made the same point to the finance committee’s human services subcommittee a few hours later.

Parents of special education students describe the transition to adult services as “falling off a cliff,” said A. Anthony Antosh, Director of the Sherlock Center on Disabilities at Rhode Island College.

Rebecca Boss, the BHDDH director, told commission members that there are other ways to increase wages for direct care workers besides adding to the bottom line.

Even if the state increased wages, Boss said, the milennials millennials making up the current entry-level workforce are “a little different.” Direct care workers need adequate training and supports. “It’s about making sure people love their jobs,” Boss said.

L to R: Louis DiPalma, Rebecca Boss, Heather Mincey OF DDD. * Photo By Anne Peters

Wages are “part of it,” she said, but “I’m hesitant to say it’s the solution. It’s part of the solution.”

She recalled testimony presented to the commission in January about Vermont’s system, which included higher rates for direct care workers but much less reliance than Rhode Island on costly group homes.

Later, Boss told the House Finance subcommittee that she wants to reduce the number of adults with developmental disabilities living in group homes from the current 32 percent to the national average, 26 percent.

BHDDH also has launched a review of the reimbursement rates the state pays to private providers under the terms of Project Sustainability, with an eye toward creating an alternate payment model to the current fee-for service system.

Tom Kane, CEO of AccessPoint, reminded the finance committee members that the same healthcare consultant who helped develop Project Sustainability has just recommended that California increase developmental disability budget by 40 percent, or $1.8 billion. Rhode Island should be prepared for a a report that recommends a similar percentage increase, ane said, given that the state underfunded Project Sustainability from its inception.

Louis DiPalma, D-Middletown, the chairman of the Project Sustainability commission, made the same point earlier in the day.

The consultant hired for the rate review and study of alternate payment model, Elena Nicolella, executive director of the New England States Consortium Systems Organization, will speak at the next meeting of the Project Sustainability commission, according to DiPalma, the commission chairman. Nicolella is also a former Medicaid director in Rhode Island. The date of that meeting has not yet been set.

Advocates: RI Must Put Higher Value On DD Workforce To Ensure Stability In Client Services

Image courtesy of RI Capitol TV

By Gina Macris

The incremental pay increase that Rhode Island Governor Gina Raimondo proposes for those who care for adults with developmental disabilities- about 34 to 41 cents an hour - is “much appreciated,” Tom Kane, CEO of AccessPoint RI, told the House Finance Committee recently.

But “it’s not enough,” Kane added quickly.

Entry-level workers making an average of $11.44 an hour, or more experienced colleagues paid an average of $12.50 an hour, are “often helping a person eat, shower, use the bathroom, or they could be helping someone learn how to drive their car,” Kane said.

“It is a completely and utterly important job, but based on the funding available, it is not really valued by our state,” Kane continued.

“ I’ve said this in this room a number of times. A budget is a statement of values, and what we’re saying is that this work isn’t worth enough money to make a living.”

To illustrate his point, Kane told Finance Committee members that he searched for jobs on the website Indeed.com to prepare for his testimony March 13 and found a posting from a kennel seeking someone to clean cages for $14 an hour.

“Not that I would disparage any job that anyone would have,” Kane said. “I think there should be dignity in all work. I think as a society we have to say, for those who care and support the people to live in the community, to try to have the best life possible, we need to fund the agencies to pay a reasonable rate.”

Kane spoke from the perspective of some three dozen private service providers in Rhode Island, the core of the state’s developmental disability service system. These agencies are trying to make ends meet while dealing with high job turnover and high vacancy rates, as well as the costly overtime it requires to ensure the safety of the vulnerable people in their care.

In the context of the state’s fee-for-service Medicaid reimbursement system, now in its eighth year, the concerns of the providers converge with those of a 2014 federal consent decree which spells out the civil rights of people who, through an accident of birth, spend a lifetime trying each day to rise to the challenge of diverse disabilities.

And in the past year, there has been growing pressure for change, both from those overseeing the implementation of the consent decree and from an expanding chorus of advocates.

In a “Week of Action” planned by the Community Provider Network of Rhode Island (CPNRI) March 26 through 28, providers and their supporters, including consumers and their families, will fan out under the State House rotunda to buttonhole individual legislators in the hours before the bell sounds shrilly at 4 p.m. calling the House and Senate to order.

In the fiscal year beginning July 1, Raimondo has proposed a $6.4 million budget increase targeted for pay raises, including $3 million in state revenue and $3.4 million in federal Medicaid funds. This sum would raise the wages of direct support workers by what state officials estimate as 43 cents an hour.

But the leaders of CPNRI and the Provider Council, another trade association, say that to stabilize the private system of developmental disability services, providers need about $28.5 million in state revenue, which would generate a roughly equal amount in federal Medicaid payments.

“We recognize that this is a substantial amount of money, but it is a result of chronic underfunding,” said Donna Martin and Peter Quattromani in a letter to Raimondo dated Jan. 9. Until March, Martin was executive director of CPNRI. Quattromani, executive director of United Cerebral Palsy of Rhode Island, represented the Provider Council.

Their reference to “chronic underfunding” alludes to “Project Sustainability,” the fee-for service funding model enacted by the General Assembly in 2011 with a $26-million budget cut. Project Sustainability was cited by the U.S. Department of Justice in 2014 as contributing to a segregated system of services that violated the integration mandate of the Americans With Disabilities Act.

With the closing of the Ladd School in 1994, Rhode Island was once first in the nation in de-institutionalizing adults with developmental disabilities and its efforts to include former residents in everyday life in the community. Today, 25 years after the Ladd School was shuttered, Rhode Island is ranked 32nd among the states in its inclusion efforts by CPNRI’s national affiliate, the American Network of Community Options and Resources.

Project Sustainability is currently the subject of two separate reviews, one by a special legislative commission and another by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), which has hired a consultant to scrutinize both the reimbursement rates and the fee-for-service model itself.

Between 2011 and 2012, Project Sustainability exacerbated a downward trend in funding for developmental disabilities that eventually leveled off but has not caught up with the pace of inflation, despite budget increases in recent years, according to a ten-year analysis done by CPNRI. The study used state budget figures and consumer price index information kept by the state Department of Labor and Training.

Chart Courtesy of CPNRI

Low wages have put Rhode Island service providers at a disadvantage in trying to recruit a variety of personal care workers like those who work with adults with developmental disabilities, experts say.

CPNRI reports that about one in three workers leave a developmental disability job every year, mostly, they say, because they can’t pay their bills. One in five positions remain vacant, driving up the cost of overtime necessary to ensure the safety of the vulnerable people in care, according to the trade association.

PHI National, long-term care consultants, have produced a chart comparing the earnings of personal care workers in Rhode Island, Connecticut and Massachusetts that shows Rhode Island with the lowest wages and the least buying power relative to the minimum wage.

chart courtesty of PHI and CPNRI

Policy experts say that basic demographic data for the nation indicates a shortage of personal care workers in the next few decades. That was one of the key messages delivered by Mary Lee Faye, executive director of the National Association of State Directors of Developmental Disabilities Services, to the Project Sustainability study commission in January.

Meanwhile, the House Fiscal Office estimates that the governor’s proposed raise for front-line developmental disability workers would add add 41 cents to their average hourly wage, lifting it from $12.27 an hour to $12.68 an hour. The overall $6.4 million pay hike doesn’t include raises for supervisors or job development and support coordinators, the House Fiscal Advisor, Sharon Reynolds Ferland, has told the House Finance Committee.

Providers say the state’s estimates don’t match up with actual costs. The state funds 35 percent of overhead related to employment, including mandatory costs like health and dental insurance, workers compensation insurance, payroll taxes, paid time off and other items, according to a CPNRI policy paper.

In reality, providers say, these employee-related expenses cost 64 percent[1] of wages – a point CPNRI’s Martin and the Provider Council’s Quattromani made in their Jan. 9 letter to Raimondo.

Providers fill the gap between the available state and federal Medicaid funding and the actual costs of employee-related overhead by reducing the amount of the wage increase passed along to workers. Kane, in his testimony, said that for the lowest-paid direct care workers, Raimondo’s planned pay increase will not even cover the cost of a separate proposal she has made to increase the state’s minimum wage for all workers from $10.50 to $11.10.

In the last few years, individuals with developmental disabilities, their families, and providers have gained legislative advocates, most prominently Sen. Louis DiPalma, D-Middletown, who is the first vice-president of the Senate Finance Committee.

DiPalma, as chairman of the special legislative commission studying Project Sustainability, convinced a consultant involved in developing that fee-for-service model to return to Rhode Island and testify about his work last November.

Mark Podrazik, a principal in the Arizona-based Burns & Associates, made it clear that Project Sustainability was shaped in a frantic effort to control costs.

Mark Podrazik * Photo By Anne Peters

The firm ultimately was paid a total of $1.4 million to develop Project Sustainability and monitor how it affected spending for developmental disabilities services. (The funding model contains no provisions for measuring the impact of services on individuals.)

Podrazik testified that some of Burn’s key recommendations were ignored, including a proposed base pay of $13.97 an hour for direct care workers that would increase within a year or two to $15 an hour. That was in 2011.

Today, eight years later, advocates are still chasing that $15-hour wage. About a month ago, DiPalma and Rep. Evan Shanley, D-Warwick, introduced companion bills to raise direct care workers’ pay to $15 an hour by July 1, 2020. The chairman of the Senate Finance Committee, William D. Conley, was among the co-sponsors of DiPalma’s bill.

More recently, DiPalma introduced a second bill that would require all private human service agencies under contract with the state to pay their employees at least 44 percent above the minimum wage at any given time. Both Conley and Senate President Dominick Ruggerio have signed on to this bill as co-sponsors.

A year ago at this time, Raimondo had proposed an $18.4 million cut in developmental disability services for reasons that were never spelled out in public. Raimondo rejected warnings of(BHDDH) that the move would result in waiting lists for services or cuts in programming.

The proposed cut appeared to be unacceptable to an independent court monitor who continues to oversee implementation of the 2014 consent decree. The agreement calls for integrated, community-based services that are inherently more costly than the facility-based system embedded in Project Sustainability.

In May, 2018, the monitor, Charles Moseley, obtained written assurances from Raimondo that she would continue to support the work of the consent decree, which in the moment meant restoring the almost all the $18-million cut.

In the courtroom, the judge who periodically oversees the status of the consent decree, John j. McConnell, Jr. of U.S. District Court, has indicated his willingness to issue orders to ensure that specific goals of the consent decree are met. At the same time, he said he couldn’t order the state to spend a certain amount to achieve them.

Meanwhile, Moseley has continued to keep abreast of budget developments. In February he wrote McConnell, saying Raimondo’s proposed budget “appears adequate” to cover a deficit in the current fiscal year and fund the consent decree in the budget beginning July 1.

Without mentioning how the Governor may have calculated developmental disability budgets in the past, Moseley made a point of saying he has received assurances that the latest figures are based on real-time data about the projected use of developmental disability services.

The state’s lawyer, Marc DeSisto, has assured him that “the Governor’s recommended budget accepts the most up-to-date projections for financing the current costs of the system to ensure no changes for individuals with DD and continued commitment to achieving Consent Decree outcomes,” Moseley wrote the judge.

Moseley put the current working budget for the private system of developmental disability services at about $229.4 million. Raimondo’s proposal adds about $4 million to finish the current fiscal year, for a total of $233.4 million. Moseley said the increase includes:

· $1 million for the estimated growth in the number of people receiving services

· $1.3 million for increased costs of providing services

· $645,000 to compensate for unrealized savings in moving group home residents into less costly residential options

· $500,000 in other priorities.

In the fiscal year beginning July 1, Moseley said, Raimondo would add about $7.3 million to the private developmental disability system, for a total of $240.2 million. That figure includes:

• $516,000 for continued growth in the number of people receiving services

• $2.7 million for increased costs in providing services.

• $6.4 million for the wage increase to direct care staff.

Those totals are offset by about $1.3 million in increased expectations for savings in residential costs and another million in savings from a reform initiative that didn’t start on time.

Moseley said all his figures were rounded off.

Deep in the background, BHDDH is quietly gearing up for a top-to-bottom analysis of Project Sustainability itself – a move applauded by DiPalma, providers, families and consumers. The lack of flexibility in services provided by Project Sustainability also has drawn the criticism of the court monitor.

Providers have said the funding formula does not allow them to plan on services for longer than three months at a time and makes it difficult for them to base their services in the community.

For example, Project Sustainability assigns staffing ratios according to the degree to which a person may be unable to do basic things independently, but doesn’t take into account the resources that person might need to get to a job – or hockey game – in the community.

Project Sustainability originally made it difficult for individuals to hold jobs in the community by providing work-related services only at the expense of other kinds of daytime supports.

In 2017, to comply with the work goals of the consent decree, BHDDH launched an add-on program of performance payments for providers for placing clients in community-based employment and for meeting job-retention goals.

DiPalma has said it is imperative that BHDDH finish a new rate model for private developmental disability services in time for Raimondo to introduce her budget to the General Assembly next January.

To satisfy the consent decree, the new design would have to focus on helping individuals lead regular lives in the community. Such a model would inevitably demand a greater financial commitment from the state and pose a new test of lawmakers’ values.

RI DD Study Commission To Meet March 28 To Begin Airing Recommendations For Change

By Gina Macris

The special legislative commission studying Project Sustainability, Rhode Island’s fee-for-service funding model for adult developmental disability services, will resume deliberations March 28, according to its chairman, Sen. Louis DiPalma, D-Middletown.

The commission last met in January, hearing testimony on best practices from one national expert and another from Vermont, where the system appears to be closely aligned with the needs and preferences of individuals.

DiPalma said he has spent the intervening weeks meeting one-on-one with commission members who represent the state and various segments of the developmental disability community to jump-start their analysis of expert testimony the commission has received since last fall. By the time of the March 28 meeting, DiPalma said, he expects commission members to be ready to make well-developed recommendations that identify concrete goals and the strategies for achieving them.

DiPalma said the vision of the commission is to have a more individualized, or “person-centered” system within the next five years.

He said he expects it will take two meetings to fully air the members’ recommendations on how to get there.

A review of Project Sustainability’s rates and the fee-for-service model itself would have been the commission’s first recommendation, if the state had not already launched that project, DiPalma said.

“The reimbursement model is the foundation and is pivotal to everything that is done,” he said. Project Sustainability, enacted by the General Assembly in 2011, did not reduce services or create waiting lists but was implemented on the backs of private providers and their employees, DiPalma said.

Project Sustainability also has been criticized by the U.S. Department of Justice, which found that it incentivized segregated services for adults with developmental disabilities, in violation of the integration mandate of the Americans with Disabilities Act. That finding and others resulted in a 2014 consent decree, which authorizes broad federal oversight of the state’s efforts to transform its system to a network of community-based, individualized services that put the consumer first.

The state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) recently hired the non-profit New England States Consortium Systems Organization as a consultant in reviewing the fee-for-service model and its rates.

DiPalma has said it is imperative that the review be completed in time for Governor Gina Raimondo to submit her budget proposal to the General Assembly in January, 2020. He said he believes the commission can have an oversight role on the implementation of any changes in the rate model that BHDDH recommends.

DiPalma said the commission meeting on Thursday, March 28, will run from 2-4 p.m. in the Senate Lounge at the State House.

RI To Review "Project Sustainability" Funding Model For DD Services With Help From NESCSO

By Gina Macris

The state of Rhode Island has hired NESCSO, the non-profit New England States Consortium Systems Organization, to review the fee-for-service Medicaid funding structure used to reimburse private providers of services for adults with developmental disabilities since 2011.

The project, launched by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), represents a key step toward meeting the overall objectives of a 2014 consent decree which requires the state to create a community-based system of services to correct violations of the integration mandate of the Americans With Disabilities (ADA.)

The current fee-for-service reimbursement model, called Project Sustainability, incentivizes facility-based, segregated services, according to findings of the U.S. Department of Justice which led to the consent decree.

Project Sustainability, accompanied by $26 million in budget cuts effective July 1, 2011, resulted in drastic wage reductions among private service providers, but raising worker pay alone will not fix the problem.

Project Sustainability also was set up to fund staffing for groups of people engaged in activities in one place but didn’t provide for the degree of supervision or transportation needed to individualize services in the community on a broad scale, as required by the Olmstead decision of the U.S. Supreme Court. That decision re-affirmed the integration mandate of the ADA.

In sheltered settings, for example, the ratio of direct care workers to clients might have been set in the funding formula at 1 to 10, but additional staffing would be needed to support that many people in the community, according to language in the contract between NESCSO and BHDDH.

The contract says supplemental payments have been used to “address the deficiency in the payment rates.” These supplemental payments “are an increasing portion of overall payments, reflecting the inadequacy of the current rates,” the contract said.

It says BHDDDH is seeking technical assistance from NESCSO in reviewing the best strategies for achieving an integrated, individualized system of services that complies with both the consent decree and the Medicaid Home and Community-Based Services Final Rule.

The consent decree affects daytime services, with an emphasis on competitive employment for adults with developmental disabilities.

The Home and Community-Based Final Rule (HCBS) is Medicaid’s interpretation of what the ADA’s integration mandate should look like in practice. Unlike the consent decree, it addresses residential services, calling for options that enable clients to live in less restrictive settings than group homes.

BHDDH also asks NESCSO to help it develop an “optimal and balanced system of services and payments” that will promote individually-designed programs according to the preferences and direction of the consumers themselves.

As part of the overall picture, the design and oversight of individual service plans would be separated from funding and actual delivery of supports to protect the interests of consumers and comply with the HCBS Final Rule in so-called “conflict-free case management.”

The consent decree also calls for a separation between funding, case management, and delivery of services. Currently, BHDDH is responsible for both funding and case management.

The total contract, designed for an 18-month period, will cost nearly $1,366,000 in federal and state Medicaid funds. That sum includes the entire developmental disabilities project, a rate review for behavioral healthcare services, and technical assistance at Eleanor Slater Hospital in connection with developing outpatient services for patients.

A BHDDH spokeswoman said Feb. 28 that the amount to be spent in the current fiscal year on the developmental disabilities portion of the project, originally set at about $400,000, will be scaled back to $200,000, because the work did not begin as anticipated in January. The fiscal year ends June 30.

There is $500,000 budgeted for the developmental disabilities work in the fiscal year beginning July 1.

BHDDH director Rebecca Boss said the department “Is pleased to partner” with NESCSO.

“NESCSO offers BHDDH the expertise of the other New England states and brings a team with background in specialized population-based needs and solutions, financial expertise, analytical depth and knowledge of federal regulation, resources and compliance requirements,” she said.

NESCSO is a non-profit collaboration among the health and human services agencies of Rhode Island, Massachusetts, Connecticut, New Hampshire and Vermont and the University of Massachusetts Medical School. Through shared information and expertise, it works to promote policies and programs that will serve the needs of New England states in a cost-effective manner, according to its website.

State Sen. Louis DiPalma, D-Middletown, the chairman of special legislative commission studying Project Sustainability, said the review of the funding model will be “pivotal” in shaping the future of the private system of developmental disability services.

“I give the department (BHDDH) credit” for moving forward with the project, DiPalma said. NESCSO, led by a former Rhode Island Medicaid director, Elena Nicolella, is held in high regard, he said.

At the same time, DiPalma said it is imperative that the review of the funding structure begin immediately and be completed in time for Governor Gina Raimondo to submit her budget proposal to the General Assembly for the fiscal year beginning July 1, 2020.

Expert testimony already given to the Project Sustainability commission made it clear that a review of the funding structure was long overdue, DiPalma said. With BHDDH already taking that step, the commission might still say that a rate review should be conducted every five years, as recommended by healthcare consultant Mark Podrazik.

Podrazik is a principal in Burns & Associates, which was hired to help BHDDH develop Project Sustainability. Testifying in November, he made it clear that the state ignored some of the firm’s key recommendations, instead shaping the funding structure through a frenzy to control costs.

Experts: Sustainable, Effective DD Systems Support Individuals; Don't Pigeonhole People In Groups

Mary Lee Fay and William Ashe * All Photos By Anne Peters

By Gina Macris

When it comes to reforming service systems for those with developmental disabilities, policy makers often succumb to a fundamentally flawed approach, one expert told a Rhode Island Senate study commission Jan. 8.

Policy makers tend to “think about people in groups, but not think about people as people,” said William Ashe at a meeting of the commission, looking into how Rhode Island supports private service providers.

Ashe has helped the state of Vermont evolve toward a system that puts the needs of the individual first.

He also has become familiar with Rhode Island as a consultant to the federal court monitor overseeing implementation of a 2014 consent decree requiring the state to transform its segregated service model to a system that is integrated with the community.

Asked his opinion of Rhode Island system, Ashe said that what he’s seen leads him to believe it is a “barrier” to people’s ability to live more “independent and connected lives.” Ashe said his opinion is his own, not that of the monitor.

His comment,, however, happened to coincide with findings of the U.S. Department of Justice in 2014, which said Rhode Island’s funding rules incentivized segregation.

Ashe is executive director of Upper Valley Services, which serves a single county in Vermont that is about half the size of Rhode Island. He addressed the commission along with Mary Lee Fay, executive director of the National Association of State Directors of Developmental Disabilities Services (NASDDDS).

Fay presented a broad swath of statistics on nationwide trends, but she nevertheless arrived at basically the same place as Ashe, talking about building services around relationships between persons with disabilities, their families and other important people in their lives.

How To Apply Best Practices To Rhode Island?

The session raised questions about how members of the commission will process the information in coming weeks and apply it to Rhode Island.

For private providers, Rhode Island has a fee-for-service system authorizing payments to providers only three months at a time, for a fixed menu of supports, requiring documentation of each worker’s daytime interaction with each client in 15-minute increments.

There is also a parallel state-run system of group homes that is exempt from the rules applied to private providers, even though they are all paid through the federal-state Medicaid program.

With all its emphasis on making private providers accountable for each minute of service, Rhode Island’s funding model has no definition or measure of what the services are supposed to accomplish in terms of stabilizing or improving people’s lives.

Successful outcomes were a recurring theme among the best practices described by Ashe and Fay.

L to R: Commission Members Deb Kney, Kevin McHale, Tina SPears, and Chairman Louis DiPalma

After the meeting, the commission chairman, Sen. Louis DiPalma, D-Middletown, said the speakers offered a lot of “food for thought”. At the same time, he said, he wants to know more about the context of the successes in Vermont.

There, the predominant housing option is shared living in private homes – even for individuals who have challenging behavior - and services are tailored, or “bundled,” for a year’s time into individualized funding authorizations based on a person’s needs and goals.

Vermont’s system has been decades in the making, and DiPalma said he wants to know more about how the state got to where it is today. He said he expects commission members to begin airing their thoughts about the future of Rhode Island’s developmental disability system at the next meeting, yet to be scheduled, in late January.

Demographics, Economics Converge To Squeeze Human Services

Fay said that all the states are facing the same pressures, driven in part by the aging of the large population born after World War II.

Baby boomers have:

• Increased the demand for the same type of direct care workers for the elderly as those who are employed in the field of developmental disabilities

• Driven up the federal Medicaid and Medicare expenses, both entitlement programs with no cap.

Illustrating her point, Fay said that the fastest segment of the population is the elderly aged 85 and older. About 70 percent of that group needs some kind of assistance, she said.

Meanwhile, the expansion of Medicare and Medicaid, combined with last year’s tax cut, will lead to continuing debate in Congress about the future of these safety-net programs, Fay said.

At the same time, demographic projections point to a shortage of direct care workers. The group most likely to go into direct care work – women aged 18 to 55 – remains flat in demographic projections 20 years into the future.

Low wages are an issue with the current workforce, but Fay said the demographics indicate there just will not be enough workers to go around in the future. States “won’t be able to buy” their way out of the labor shortage, which will get much worse in the years to come, she said.

Instead, she said, states will have to “think” their way out of the crisis with a new approach; less reliance on 24-hour care and more supports built around families – and employment.

In Vermont, that approach seems to have paid off more often than not, according to Ashe.

Ashe’s agency is one of ten organizations in Vermont which have broad responsibilities within a designated area for serving adults with developmental disabilities, although there are several other specialized providers without geographic boundaries.

To receive immediate funding, individuals must meet high-priority standards as defined by law. They involve such factors as health and safety considerations or the need for care while both parents work outside the home.

In 2017, there were 238 people statewide on a waiting list for non-priority services, Ashe said.

Ashe’s agency, Upper Valley Services, covers Orange County, an area half the size of Rhode Island with a total population of 28,000, mostly spread out in towns and villages with populations of fewer than 1,500. There is one traffic light in the entire county, Ashe said.

Ashe said all service plans are individually designed and reviewed by a board which includes representatives of providers and consumers as well as state officials. The board’s recommendation is submitted to the state, which makes the final decision on services and funding.

Vermont and RI Differ on Funding Approaches, Wages

Vermont, like most other states, allocates funding on an annual basis. Rhode Island is the only state which funds services quarterly, Fay said.

And unlike Vermont, Rhode Island allocates funding first and expects providers to come up with an individual service plan that doesn’t exceed the budget.

Ashe credits the Vermont legislature for making a practice of anticipating an increasing caseload and funding to meet its needs, rather than forcing providers to dilute the supports for people they already serve to cover the new arrivals.

In 2017, Ashe said, 390 people benefited from the legislature’s new-caseload funding practice, he said.

Vermont’s designation of responsible agencies means they cannot reject anyone in their geographic area who meets the eligibility criteria for priority funding. As a one-stop shop for everyone, Ashe’s agency provides a broad range of services to about 200 individuals in its jurisdiction.

The starting wage at Upper Valley Services is $14 an hour and the annual turnover is 13 percent, significantly lower than the statewide turnover rate of about 23 to 25 percent. If Ashe must serve a particularly challenging client, he said, he has the authority to increase a worker’s hourly rate. Instead of $14, he said, he might pay $18.

Rhode Island providers pay an average entry wage of $11.36 an hour, according to a trade association, although some workers new on the job make minimum wage, which is $10.50 an hour. Job turnover in Rhode Island averages about 33 percent each year, although the rate varies among individual providers.

Nationwide, the average state-level rate of turnover is 46 percent, according to Fay.

In Vermont, the average cost of services per person is $60,037, Ashe said, slightly higher than in Rhode Island.

In a statewide population of just over 600,000, Vermont supports about 4,500 people with intellectual or developmental disabilities, about the same number as in Rhode Island, with a population of slightly more than one million.

Individuals have control over their service plans and may move money from one category to another, manage part or all of their services themselves, or let the agency be the service manager.

Employment And Housing

Among the clients of Upper Valley Services, 48 percent have jobs, averaging 8 hours a week, Ashe said.

Nationwide, the employment rate for adults with developmental disabilities is 19 percent, according to Ashe and Fay. Rhode Island’s rate is above the national average, but an exact figure was not immediately available.

Fay emphasized that employment is important not only for income, but also because a job provides autonomy and leads to connections with other people.

Shared living is one of five housing options in Vermont that, taken together, offer a broad range of supervision, up to and including intermediate care with a maximum of six residents in one facility.

The annual stipend for shared living is about $32,500. Ashe said he expects one responsible adult in the family to stay at home and not take an outside job.

Shared living should be viewed as part of a relationship, Fay said, not “foster care” or a “placement” that has nothing to do with the participants’ connections to each other.

24-Hour Case Management Key To Success

Ashe said the core of his operations is a network of case managers, each one with a caseload of about 14 people, who are on call 24 hours a day.

Case managers may arrange respite care for shared living providers or provide additional in-home supports, among a broad range of activities that include diffusing a crisis experienced by someone on their caseload.

In most instances, Ashe said, “the problem is not the person but the services around that person.”

His agency focuses on “re-building the support system to help that person stay in the community,” Ashe said.

In Vermont in 2017, there were five psychiatric admissions among adults with developmental disabilities, according to figures provided by Ashe.

Responding to a question from Rebecca Boss, Director of the Rhode Island Department of Behavioral Health Care, Developmental Disabilities and Hospitals, Ashe described the history of a crisis team begun in 1991 and crisis training for direct care staff in the field that has helped keep the number of psychiatric hospitalizations low.

Lending a national perspective, Fay said states are learning not to bring families to the table and expect them to speak a bureaucratic language to ask for a specific program, but instead to discuss ‘what is happening in your life and how can we support you?’’

Sometimes, families accept more services than they need, because they fear they will not be able to get them in the future, Fay said.

“I have visited states where people say, ‘I’ve taken a service not because I need it, but because if I say no, I’m afraid I won’t get access to anything in the future,’ “ Fay said.

States have to build trust in families, she said. Systems have to be designed to create an underlying confidence among families that the support will be there as the family’s needs change, she said.

Fay said “there isn’t a system out there that has it down perfectly,” but “states that do it well succeed because they have partnerships” with their communities.

To see an outline of Fay’s full presentation, click here.

To view a video of the commission meeting, click here. Look for an icon labeled with the date 1-8-19 and a title that reads “Special Legislative Study Commission To Evaluate Project Sustainability.” Note that some browsers may need Flash to play the video.

RI Senate DD Commission To Hear Options For Changing Funding Model From Two Experts

By Gina Macris

Two experts with broad experience in developmental disabilities will provide their perspectives on best practices Tuesday, Jan. 8 at the next meeting of the Rhode Island Senate commission studying “Project Sustainability,” the state’s much-criticized fee-for-service reimbursement system for private service providers.

Mary Lee Fay is executive director of the National Association of State Directors of Developmental Disabilities Services (NASDDDS), based in Alexandria, VA.

William Ashe helped develop Vermont’s current “bundled” payment system. So-called “bundled” payments cover a defined set of services for a specific period of time. The system allows for individualized funding around each person’s unique needs, according to a description of the program Ashe wrote for the Vermont legislature in 2016. He is also involved in current efforts to update the Vermont payment system.

Ashe has experience in state government in Massachusetts and as a longtime private provider of developmental disability services in Vermont.

He has collaborated with the independent federal court monitor who is overseeing Rhode Island’s compliance with a 2014 federal consent decree intended to desegregate the state’s developmental disability service. Ashe has accompanied the monitor, Charles Moseley, on site visits and has written reports that have been incorporated into Moseley’s recommendations to the U.S. District Court.

Fay worked for much of her career for the state of Oregon, becoming director of developmental disabilities, a post she held for 11 years before she moved to NASDDDS in 2012. She is credited with leading the way for Oregon to become a leader in high quality services that allow adults with developmental disabilities more control over their lives.

For her first three years at NASDDDS, Fay focused on working with states to engage adults with developmental disabilities with their communities. She was named executive director in 2015.

Both Ashe and Fay were recommended to the commission by Moseley, the monitor in the consent decree case.

According to a spokeswoman for the commission chairman, Sen. Louis DiPalma, D-Middletown, Moseley said both speakers:

• are familiar with the way different states manage services

• are familiar with DD funding policies, practices, and requirements under Medicaid;

• understand rates, rate setting, and provider billing processes;

• understand the impact that funding has on the ability of individuals to live and experience full, productive, and integrated lives; and

• understand approaches other states are using and lessons learned by their successes and challenges.

The Jan. 8 Commission meeting will be held from 2 to 4 p.m. in the Senate Lounge at the State House.

'Our Lives Turned Upside Down' When Daughter Entered RI Adult DD System, Mother Says

Louis DiPalma, Rebecca Boss, and Kerri Zanchi watch A. Anthony Antosh of Rhode Island College present consumer and family perspectives on the state’s services for adults with developmental disabilities Photo by Anne Peters

By Gina Macris

A Rhode Island Senate study commission spent nearly two hours Dec. 12 laying out a catalog of strengths and weaknesses in Rhode Island’s system for helping people with developmental disabilities.

But in the end, the personal stories of two mothers, Amy Kelly of Smithfield and Martha Costa of Portsmouth, focused the commission’s attention on the crises now unfolding for at least several families who are at their wits end.

In the catalogue, their experiences come under “residential services-need for specialized medical/behavioral residential models.”

For Amy Kelly, that means that every single service provider in Rhode Island – about three dozen - has turned away her 21 year-old daughter, who is autistic, has behavioral problems, and functions in many ways as a kindergartener.

“So now what do I do?” Kelly asked in a letter to the commission chairman, Sen. Louis DiPalma, D-Middletown. Kelly is a widow, and works fulltime. Her daughter, Kayla, was asked to leave the Trudeau Center in Warwick because of injuries to staff.

For a month now, Kayla has been at home all the time and her problematic behaviors have intensified, Kelly wrote. “She is out of her routine, asking for “friends,” “yellow bus,” “trip,” and other favorite things and experiences that she misses..

Kelly has been forced to choose “self-directed” services, meaning that she must find her own workers,“which is pretty much impossible,” she wrote to DiPalma.

And the Home Based Therapeutic Services that helped Kayla outside of school hours while she was still in special education are no longer available.

“I cannot believe there are no programs in RI for families in this situation!” Kelly wrote. “When my daughter turned 21 in May everything in our lives turned upside down.”

Martha Costa * courtesy of Capitol TV

Martha Costa agreed. She attended the Commission hearing at the State House on behalf of her own family and five others in Portsmouth who have become friends as their children have faced behavioral challenges growing up and have aged out of the school system into purview of the state Division of Developmental Disabilities (DDD).

As the mother of a 22 year-old man on the autism spectrum, she said her experience has been that once young people with complex needs turn 21, “there is really no place for them to go.”

The family might be told to go to a hospital, but with the exception of Butler Hospital in Providence, a mental health facility, “the hospital is horrible, because it’s just more trauma going there.”

The 21 year-old daughter of a friend of Costa’s had meltowns after her mother – her primary caregiver and the one who organized her services - died in September. The woman’s daughter, who has multiple disabilities, was hospitalized because there was “nowhere for her to go,” Costa said. The young woman was “restrained, medically and physically. It’s heartbreaking,” Costa said.

“It’s lucky you have good parents who are helping these kids, but you know, we’re all getting older and we’re not going to be able to,” she said. The aging of parents, who are often primary care givers, is a broad concern among families, according to survey results.

“There are some kids who don’t have that parent support and they’re on the street,” Costa said. “That’s sad, when they can be a very productive part of our community.”

Kerri Zanchi, the state’s Director of Developmental Disabilities, thanked Costa for coming forward.

One of the biggest challenges in residential services, Zanchi said, is a dearth of specialized homes for individuals with behavioral and other complex needs, as well as a lack of therapists and other clinicians to give them the proper attention.

“There’s a huge need coming” as teenagers with complex disabilities leave schools, she said. “We need to know what that need is and we need to start working on it lot earlier than when they turn 21 and come into our system.”

Zanchi referred to the division’s Eligibility by 17 policy, which aims to give families, schools, and the adult system plenty of time to plan a smooth transition.

In the catalogue, one of the “challenges” the state officials listed in implementing the Eligibility by 17 policy is “resource and service difference for transitioning youth vs adult services.” In the summary that family and consumer representatives submitted, they commented that “transition from high school is a ‘nightmare.“

Zanchi continued her response to Costa. “We certainly recognize every day the crises we have to manage” in order to support the individuals involved and to try to grow the system’s capacity, she said.

And there are committed providers who are willing to help the state, but who also want to do that with the right staffing that will keep all individuals safe, Zanchi said. “We are all hands on deck. I know it probably doesn’t feel like enough,” she said.

Costa agreed. “ I understand what you’ve been doing and I know that everyone has been working hard . Still, it’s not enough,” she said.

Gloria Quinn, executive director of West Bay Residential Services, said her agency works very well with the state as a partner in exceptional situations, but it is extremely difficult as long as there there is a paucity of established expertise in the community that is accessible to the developmental disabilities providers.

“Very often we are creating something new, which takes an enormous amount of time,” Quinn said, and the funding is not enough. Most importantly, when the agency helps someone with increased needs it runs the risk of jeopardizing supports for other people, particularly in a residential setting, she said.

Peter Quattromani, President and CEO of United Cerebral Palsy Rhode Island, pointed to the low wages for direct care staff that frustrate all involved; those who love the work but can’t pay the bills, employers who can’t fill jobs, and consumers and families who can’t find suitable services.

“It’s an incredibly difficult job” , he said, and attracting staff is likewise very difficult, given the low wages.

Commission member Kelly Donovan, who herself receives services from DDD, had sparked the conversation by wondering aloud why those with serious behavioral problems have difficulty finding appropriate support.

She said she agreed with Quattromani and Costa, and she added another factor that she believes contributes to the problem: a societal stigma against those with a broad range of mental illnesses who exhibit aggressive behavior.

During the last month, commission members, representing the executive branch of government, private providers, and consumers and their families, were asked to complete a survey cataloging the strengths and weaknesses of the existing Medicaid fee-for-service system, called Project Sustainability.

The commission plans to use the results of the survey, named the “Current State Assessment,” to seek advice from outside experts and further the group’s deliberations in the future, according to a statement issued at DiPalma’s behest.

Directly or indirectly, a lack of adequate funding in various contexts permeated three summaries of the survey results, each one presented by a representative of each of the three segments of the commission. Transportation, for example, has become a bigger problem now that there is a greater emphasis on community-based services, which require more than the two daily trips usually allowed by individual funding authorizations. Families also cited difficulties of non-English speakers in getting information and services.

But Rebecca Boss, director of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, also said the developmental disabilities budget has increased significantly since 2015, and listed advances made in the last two years, including:

• $6.8 million for supported employment

• two annual wage increases for direct care workers (The average hourly pay for front-line workers is $11.36 an hour)

• the acquisition of a modern data management system

• an increase in staff for quality management, implementation of a federal civil rights consent decree and for Medicaid-mandated Home and Community Based Services, as well as assistance in maximizing the existing budget.

She described the funding needs of the system as “dynamic.”

“We are engaging in discussions with our partners about what those needs are,” Boss said. “Governor (Gina) Raimondo has demonstrated a willingness to look at the system and make adjustments in the budget as we go along. So this is the process that we’re currently working on and engaging in those conversations on a regular basis.”

Raimondo is to present adjustments for the current budget, as well as her proposal for the next fiscal cycle, during the third week of January.

Christopher Semonelli, a commission member and the father of a teenager with complex needs, commented on the origins of Project Sustainability, which seemed to him like system “in a death spiral, and there was basically a feeding frenzy as to how to continue the system; how to go after the available funds.”

“I don’t think the legislative base should be blamed” for cutbacks that launched Project Sustainability in 2011, “because there was a lack of advocacy, “he said. “Strong advocacy could have prevented that from happening. That is huge and needs to be built going forward.”

DiPalma had the last word. Semonelli “made a great point about advocacy, but he shouldn’t let the General Assembly off the hook,” DiPalma said. “This is where the buck stops.”

Read the summaries presented at the meeting. For the state’s assessment, click here. For consumer and advocates’ comments, click here. For service providers’ comments, click here.