RI Advocates Seek Executive Order To Ensure Patient Rights Of Disabled

By Gina Macris

The need of some people with disabilities to have a trusted person at their side to help them communicate with strangers has run up against the visitors’ ban imposed by hospitals to curb the spread of the coronavirus.

These patients have been traumatized and their medical care jeopardized in a violation of their civil rights, say Rhode Island disability rights advocates.

During the first coronavirus surge in the spring, at the urging of Disability Rights Rhode Island and other advocates, the Rhode Island Department of Health adopted a policy that exempts family members and others who act as caregivers from hospitals’ ban on visitors when patients need assistance to receive the appropriate care and to communicate with hospital staff.

But DRRI now says that the policy is not widely understood, and patients who have disabilities like dementia and autism run a high risk of being traumatized in the hospital, exhibiting new problems that make it more difficult for medical personnel to treat them.

DRRI, the Sherlock Center on Disabilities at Rhode Island College, and the Rhode Island Developmental Disabilities Council are seeking an executive order from Governor Gina Raimondo to get quick enforcement of the policy, especially during hospital admission, when it is urgently needed.

In a letter dated December 2, the executive directors of the three organizations cited 7 specific instances during the last two months in which care was compromised and patients were disoriented and severely upset.

The examples, drawn from “dozens” of complaints, including two concerning patients with severe communications problems who were administered anti-psychotic medication when they became uncooperative.

One was an elderly nursing home resident with dementia and depression who is also deaf and legally blind. She was admitted for a broken hip. Another was a young man with autism who is non-verbal. In addition to being drugged, he was restrained physically. Now he is showing signs of dementia, hospital officials have told his mother, who they continue to bar from the hospital.

The health department policy says that “when a support person is essential to the care of a patient with a disability, including patients who have altered mental status, communication barriers, or behavioral concerns (such as patients with intellectual and/or developmental disabilities, dementia, and/or behavioral health needs), accommodations for the patient should be made so that the patient can be accompanied by the support person.”

The policy goes on to describe the role of the support person in facilitating communication, equal access to treatment and informed consent “in accordance with the civil rights of patients with disabilities.” And it gives wide latitude to the definition of support person, including family members, guardians, and paid and non-paid caregivers and advocates.

The letter to Raimondo emphasizes that “this is not an issue of ‘hospital visitation’ policy, as it has sometimes erroneously been termed, although the language is unfortunately (albeit understandably) contained within ‘visitation’ policy provisions.”

“We understand the reasons for curtailing typical visitation in hospitals during the pandemic, and we fully support such restrictions when they are not essential to an individual’s access to care.”

The letter was signed by the executive directors of the three organizations, Morna Murray of DRRI; Amy Grattan of the Sherlock Center; and Kevin Nerney of the Developmental[ Disabilities Council.

The authors said the Department of Health was to follow up on the policy with a plan for ensuring hospital compliance, but no plan has materialized in the last seven months.

Meanwhile, the three agencies have continued to receive complaints from “dozens of individuals and families.” They have helped the patients and families follow up with the hospitals and officials of the health department, the executive directors said. Some have put off needed medical care for family members with disabilities because of the ban on hospital visitation, they said.

“The bottom line is that violations continue to occur and there does not appear to be any single authority that can be cited quickly and conclusively so that the intended policy can be implemented on the spot, when it is needed most urgently,” the letter said.

Having exhausted other channels over the last seven months, Murray, Grattan and Nerney said, they are seeking a virtual meeting with Raimondo to discuss the need for an executive order “to resolve this alarming situation as quickly and conclusively as possible.”

First COVID-19 Death Reported In RI DD Group Home

By Gina Macris

A woman with developmental disabilities and underlying medical issues living in a Rhode Island group home has died of COVID19, according to the state Director of Health, Nicole Alexander-Scott, M.D. MPH.

The death of the young woman, in her twenties, is one of a total of 56 deaths attributed to the virus as of April 11.

The woman, who lived in a group home managed by AccessPoint RI, died unexpectedly April 1, and was tested post mortem, said a spokesman for the state developmental disabilities agency. The test results were not available until April 9, when Alexander-Scott first disclosed the group home death. At the time, she gave no details.

The woman’s family and the people who cared for her in the group home are “devastated,” said Tina Spears, executive director of the Community Provider Network of Rhode Island (CPNRI), a trade association for about two thirds of the three dozen private agencies supporting adults with developmental disabilities in residential and daytime programs, including AccessPoint.

There has been a cluster of cases associated with AccessPoint RI, just as there has been in the case in several nursing homes, said a spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

The spokesman said the state has assigned a public health nurse to work with administrators of the group home on protocols to isolate the sick and monitor residents for system, just as it does for nursing homes and other congregate care settings where there have been clusters of at least three or four cases.

The spokesman, Randal Edgar, said BHDDH “automatically reviews all deaths or near deaths and will review this case and the response to the emergency now at hand. It is important to stress that BHDDH is confident that the provider acted in accordance with all RIDOH protocol.”

Spears also expressed her confidence that all the member agencies of CPNRI are doing their utmost to protect the people in their care.

Like the elderly, people with developmental disabilities tend to be more vulnerable to COVID-19, and congregate care settings like nursing homes and group homes only increase the risk of exposure.

It is unclear how far the coronavirus has spread among the 1180 residents of group homes for adults with developmental disabilities in Rhode Island.

On April 11, Governor Gina Raimondo reported 334 new cases, for a cumulative total of 2,349. She said there are 183 people hospitalized with COVID-19.

Alexander-Scott said there are 123 cases in ten congregate care settings, excluding nursing homes, but details were not immediately available on the number of persons who have tested positive in group homes for adults with developmental disabilities, or how many of those homes the virus has affected.

On April 9, a spokesman for the state developmental disabilities agency said 23 residents in six group homes had tested positive.

Alexander-Scott said that the Department of Health is taking “aggressive steps” in congregate care to “understand the landscape” involving the virus those settings. Among them is testing of asymptomatic individuals who have been in proximity to an infected person to better inform officials on how to best monitor each setting.

On the day before Easter Sunday, one of the biggest family-oriented holidays of the year, both Governor Raimondo and Alexander-Scott hammered home the importance of social distancing in delaying and flattening an expected surge in cases, with special attention to group living situations.

Raimondo said officials had a conference call with the leadership of nursing homes “to reiterate the absolute directive not to allow visitors.”

“The message to families to not visit loved ones in a nursing home is very difficult,” she said. The restrictions even prohibit families and friends sending packages or baskets, because each delivery person who goes inside the home represents another potential risk of exposure.

Nor should loved ones go to the windows of residents’ rooms, the governor said, because sometimes windows get opened, and that defeats the purpose of social distancing.

Instead, Raimondo called on Rhode Islanders to “be creative to show the love” with phone calls, video chats, and photos of flowers and other gifts.

“We want people to be receiving and sending the love, but we need this to be a stern message,” she said.

On a personal note, the governor said that Easter will be difficult for her, as well. It will be the first time in her life that she won’t see her mother on the holiday.

RI Governor's DD Budget Would Add $8.7 Million in Medicaid Funding For Wages, Higher Costs

By Gina Macris

Rhode Island Governor Gina Raimondo’s recently released budget proposal would add nearly $8.7 million in new funding to the system of privately-run services for adults with developmental disabilities in the next 17 months, through June 30, 2020.

Most of that overall $8.7-million-increase, $6.4 million in federal and state Medicaid money, would fund raises for workers of some three dozen private agencies that provide developmental disability services under contract with the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

The raises would take effect July 1. Funding for the added wages - an estimated 44 cents an hour – is carved out in the budget bill for Fiscal Year 2020 that Raimondo has submitted to the General Assembly.

The budget bill also requires that almost $1.6 million in federal-state Medicaid funds be earmarked for technical assistance to private providers changing from segregated care to community-based, integrated service to comply with a 2014 federal consent decree.

The current overall spending level for developmental disabilities, $271.7 million, would increase to $273.1 million for the budget ending June 30. In the next fiscal cycle beginning July 1, the spending ceiling would rise to nearly $280.9 million, including federal, state and miscellaneous sources of revenue.

The Division of Developmental Disabilities (DDD) draws more than half the resources assigned to BHDDH – which is currently budgeted for a grand total of almost $422.5 million. Under Raimondo’s plan, the bottom line for the entire department would grow to about $448.5 million in Fiscal 2020 – an increase of $26 million, including about $19.7 million in supplemental funding for the existing budget.

Developmental disability services are financed through the federal-state Medicaid program, with the federal government paying nearly 53 cents on the dollar.

The governor’s executive summary, however, tends to focus on the state outlay alone. It says $3.1 million in state funds would be earmarked to cover an existing deficit and an additional $3.3 million would be set aside in the fiscal year beginning July 1 for increased caseload costs.

Those budget items, combined with the state’s share of the $6.4 million proposed wage increase - $3 million – add up to $9.4 million, nearly twice the overall $5 million in new state tax dollars that Raimondo would apply to developmental disabilities for the remainder of the current fiscal year and the next one.

The state would have to use savings in other areas to fully fund Raimondo’s plan for developmental disabilities, but neither the budget language nor the governor’s narrative spells out which cost-cutting measures would fill the gap.

The first-quarter spending report for BHDDH put the projected deficit in developmental disabilities at a total of $7.6 million for the current fiscal year, including federal and state funding.

The updated report for the second quarter will not be ready until Jan. 31, according to BHDDH officials.

But at a recent press briefing on the budget, Rebeca Boss, the BHDDH director, said she is satisfied that the governor’s proposal will enable the department to balance its current budget.

Among other things, the plan would restore money in the current budget that the DDD otherwise would have saved if it had won federal approval for a “Health Home,” a Medicaid option featuring a managed-care approach that also provides for a third-party to coordinate services for individuals.

The Health Home would help DDD comply with a Medicaid rule for Home and Community Based Services which requires case management to be separate from funding or service delivery. Currently DDD is responsible both for funding and for case management, which Medicaid perceives as a conflict of interest.

Boss said BHDDH has not yet submitted an application for a Health Home option for developmental disabilities. The budget assumes that a health home plan for developmental disabilities will be approved and go into operation during Fiscal 2020, which begins July 1.

Medicaid will reimburse 90 percent of the state outlay for health homes for a maximum of two years. After that period, the reimbursement rate for health homes will drop back to the regular rate for Rhode Island, whatever it may be at that time..

To help close the current deficit, the governor recommended an additional $273,412 in state revenue for BHDDH to pay homemaker licensed practical nurses who work with adults with developmental disabilities. The Executive Office of Human Services granted them a slightly higher pay increase than BHDDH had budgeted and the General Assembly had approved.

In adding $3.3 million in state revenue for “caseload” expenditures for the 2020 fiscal year, Raimondo’s executive summary said she “accepts the Department’s (BHDDH’s) most up to date projections” on costs, “ensuring no changes to services for DD consumers and continued financing to improve achievement of consent decree mandated services.”

Last year at this time, Raimondo had proposed cutting a total of more than $18 million in federal-state funding from developmental disability services, with a spokeswoman for the Office of Management and Budget saying the proposed reduction was based on calculations made from “estimated growth rates in the cost of providing services.” She did not elaborate.

Raimondo, pressed by the independent court monitor overseeing the implementation of a 2014 federal civil rights consent decree, eventually restored the funding and pledged the state’s support of the work ordered by the federal court.

The consent decree requires Rhode Island to correct violations of the integration mandate of the Americans With Disabilities Act, reinforced by the 1999 Olmstead decision of the U.S. Supreme Court, by ending its over-reliance on sheltered workshops and segregated day care.

This year, according to Boss, BHDDH submitted cost projections on the basis of actual claims, as directed by the Executive Office of Health And Human Services, rather than individual funding authorizations.

In the process of updating projections, the data was refined to remove claims that had been double-counted on Medicaid rolls of both BHDDH and EOHHS, according to the executive summary of the budget.

For Fiscal 2020, the governor’s budget summary highlighted three additional areas for savings:

  • ·A continuation of “residential rebalancing”, a multi-year effort to reduce the number of people in group homes, a cost-saving measure that also is intended to provide more “community-based placements such as shared living.” The budget projects $1.5 million in “residential rebalancing” in 2020.

  • Closure of one state-operated group home for an estimated savings of nearly $92,000. The staff in that location will move to other sites, reducing the need for overtime in the state-run system.

  • So-called “right sizing” of staffing at the state-run group home system to realize additional projected savings of $202,721. “Right-sizing” means staffing patterns will be reassessed and employees will re-bid jobs. This change is expected to reduce overnight staffing and further reduce overtime costs.

RI DD Services: The Annual Scramble Begins To Avoid Waitlists or Reduced Payments To Providers

By Gina Macris

For the second consecutive year, the director of the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) has raised the possibility that adults with developmental disabilities might face waiting periods for services if the department cannot resolve a projected $9,.4 million deficit by next June.

Most of that estimated $9.4 million shortfall - $7.6 million – occurs in the Division of Developmental Disabilities (DDD).

Waiting lists and reductions in reimbursement rates to private providers are among alternatives proposed by BHDDH director Rebecca Boss in a corrective action plan for dealing with the shortage in state revenue. Private organizations do most of the front-line work with adults facing intellectual and developmental challenges.

Any state agency running over budget must submit a corrective action plan to the state budget office. Seven other agencies are in the same position as BHDDH.

While complying with the requirement for a deficit-reduction plan, BHDDH also has prepared a budget request which seeks a additional $12.7 million in state revenue for the private system of developmental disability services through June 30, 2020. That total includes:

  • $7.6 million in supplemental funding to close the gap in payments to private service providers during the current fiscal year.

  • $5.1 million for the fiscal year that begins July 1, 2019.


No Wage Hikes In BHDDH Budget Request

The combined $12.7 million request does not reflect any wage increases for direct care workers in private agencies, a BHDDH spokeswoman said. According to a trade association, workers receive an average of $11.36 an hour - less than the $12 hourly pay offered at the Target store on the other side of the Massachusetts state line in Seekonk during Thanksgiving week.

The consultant involved in developing the existing fee-for-service rate structure seven years ago said recently that it’s “past time” for an overhaul of the reimbursements. Both House and Senate leaders say they support the idea of wage hikes for front-line workers.

Governor Gina Raimondo has not responded to email requests from Developmental Disability News for comment on recent public remarks of the consultant, Mark Podrazik, President of Burns & Associates.

Raimondo is due to present her budget proposal to the General Assembly the third week in January. She must consider many factors, including a projected $41.9 million deficit in overall state spending and recent revenue estimates running about $5.4 million below the previous projections, made last May.

Federal Officials Watching Budget Process

A lot can happen between now, the start of the budget planning cycle, and the end of June, when General Assembly adopts final figures to close out one fiscal year and launch a new budget on July 1.

And when it comes to spending on developmental disabilities, the conversation has broadened in the last several years to include the ever-increasing demands for reform imposed by a 2014 federal civil rights consent decree between the state and the U.S. Department of Justice.

Before the budget was finalized in the last session of the General Assembly, the independent federal court monitor for the consent decree had sought and obtained written assurances from Raimondo that the state would support mandated systemic changes in services as Rhode Island moves toward community-based, integrated supports of adults with developmental disabilities.

In a letter dated May 14, 2018 to Charles Moseley, the federal court monitor, Raimondo said, “Rhode Island has made significant progress in meeting the requirements of the Consent Decree, and we will continue to prioritize this work.”

What the state’s commitment to developmental disabilities looks like in the current budget is level funding.

Last January, Raimondo proposed a cut of $18.4 million to payments for private service providers, but after better-than-expected revenue estimates in May, pressure from constituents, and Moseley’s request for assurances, Raimondo reversed her position and the General Assembly approved a status quo budget.

Boss Details The Current Problem

Now Boss says that level funding will not be enough to meet expenses, primarily because of an increasing caseload and rising average costs per person. These two trends can be traced back to compliance with the consent decree.

In the last fiscal year, which ended June 30, DDD spent a total of $228.3 million in federal-state Medicaid funds, including $111.1 million in state revenue, for payments to private agencies that provide most of the developmental disability services, Boss wrote to the state Budget Office in October.

The current budget authorizes an expenditure of $229.4 million for those Medicaid payments, with $107.5 from state revenue and the rest from the federal government.

However, in the current budget, DDD is expected to stretch the $229.4 million to cover some additional mandates:

  • a total of $1.5 million on contracts and staff to support the consent decree

  • $620,000 – about $400,000 more than anticipated – to pay for an increase in wages for home health aides and licensed practical nurses (LPNs) who serve adults with developmental disabilities in their own homes. Boss said the state Medicaid office had set a slightly higher rate for the LPNs than the department had anticipated.

Together, these two factors mean that there is $1 million less in the current budget than there was in the last one for actual services to adults with developmental disabilities, Boss wrote in a report to state Budget Office on spending for the first quarter of the fiscal year.

At the same time, DDD estimates its overall caseload will increase about 1.5 percent during the current budget cycle, based on trends over the last two years. That increase will cost an additional $1.1 million from state revenue,, according to Boss.

In addition, nearly 900 persons are slated for re-evaluation of their needs during the current fiscal year, with interviewers using a revised assessment that has been resulting in generally higher per-person costs since it was adopted in November, 2016, Boss said. The use of the revised assessment, the Supports Intensity Scale – A, is expected to add about $900,000 from state revenue to service costs, Boss wrote in the first-quarter spending report, submitted in October.

Moreover, DDD expects to spend all $6.8 million allocated by the General Assembly for a supported employment program that pays private providers performance bonuses for job placement and retention., The first allocation, in the fiscal year that began July 1, 2016, was underutilized.

Boss said she did not favor a wait list for services as a corrective action plan because it would cause hardship and make DDD unable to continue complying with the 2014 federal consent decree.

Rate reductions to private service providers also would make it impossible to comply with the consent decree and would destabilize the entire system of care, Boss said.

Savings anticipated in State-Run Group Homes

Boss said she does favor another option, consolidation of the state-run group home system known at Rhode Island Community Living and Supports (RICLAS.) DDD is working on closing one state-run group home and relocating existing staff to save on overtime costs, Boss said.

Changes in group home configuration toward smaller units more accessible to the community are being required anyway by the Medicaid Home and Community Based Final Rule.

The consultant for Burns & Associates, Mark Podrazik, recommended in 2011 that the state gradually eliminate RICLAS to more more equitably fund private providers, who were facing severe cuts in payments that resulted in dramatically lower wages and made it difficult for employers to fill job vacancies, problems that persists today.

In testimony Nov. 13 before a special Senate commission, Podrazik said he was told in 2011 that the state did not want to address RICLAS out of concern about a fight from unions.

Over the last several years, however, the size of the RICLAS caseload has declined through attrition. For example, at the start of 2016, there were 210 persons in RICLAS homes, state officials said at the time. Six weeks ago, in mid-October, the RICLAS caseload had shrunk to 126, according to state records.

Eric Beane, RI Secretary Of Health And Human Services, To Step Down; Career Options "Open"

By Gina Macris

ERIC BEANE * Photo Courtesy Of State Of RI

ERIC BEANE * Photo Courtesy Of State Of RI

Eric Beane, Rhode Island’s Executive Secretary of Health and Human Services, will step down at the end of the year, the office of Governor Gina Raimondo announced Nov. 15.

Over the four years of Raimondo’s first term, Beane has served the governor in several high-level capacities, most notably as a troubleshooter assigned to clean up the disastrous roll-out two years ago of UHIP – Unified Health Infrastructure Project – a computerized public assistance system that left thousands of needy individuals without benefits.

Raimondo has appointed Lisa Vura-Weis, a deputy chief of staff in her office, as interim Secretary while a search for a permanent replacement is underway.

Beane, whose last day on the job will be in mid-December, plans to travel and spend time with family and friends, according to a spokeswoman for the Executive Office of Health and Human Services. He is “leaving his career options open,” the spokeswoman said.

In a statement, Raimondo said she is “deeply grateful for Eric's four years of service to the people of Rhode Island. Because of Eric's work, Rhode Island's health and human services are undoubtedly stronger today than they were when I first took office."

Raimondo, in addition to noting his work on the UHIP system, credited Beane with directing the reform of the Department of Children, Youth and Families (DCYF) and overseeing the implementation of a “nationally recognized action plan to address the addiction and overdose crisis that is saving Rhode Islanders’ lives.”

Beane, a former trial attorney for the U.S. Department of Justice and former deputy chief of staff for former Governor Martin O’Malley of Maryland, came to Rhode Island as Raimondo’s deputy chief of staff in 2015. He also served as Raimondo’s Chief Operating Officer, overseeing social services, and served as acting director of the Department of Human Services before he was named to the Secretary’s position in the wake of UHIP scandal in May, 2017.

As acting Secretary, Vura-Weis will focus primarily on budget and management and help with a comprehensive search for a permanent replacement to Beane, according to a statement issued by the governor’s office.

In her current position she has focused on health and human services, administration, and management, working closely with Beane and Raimondo on UHIP.

Before joining the Raimondo administration she worked for the Boston Consulting Group on projects related to healthcare effectiveness. Vura-Weis also has worked for the state of New York on healthcare insurance reform. She has a master’s degree in business administration from Columbia University and a master’s degree in public health from Princeton.

The Secretary of Health and Human Services oversees the Departments of Health, DCYF, the Department of Human Services, and the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH). Among other things, BHDDH is charged with implementing reforms in services for adults with developmental disabilities to comply with a 2014 federal civil rights agreement with the Department of Justice.

RI Project Sustainability's Plan For Enhanced DD Services Was "Cover" For Budget Cuts - Testimony

By Gina Macris

Louis DiPalma, Chairman of Project Sustainability Commission Photo By Anne PETERS

Louis DiPalma, Chairman of Project Sustainability Commission Photo By Anne PETERS

Project Sustainability, introduced in Rhode Island in 2011 as a method for enhancing individualized services for adults with developmental disabilities, instead has diminished the quality of their lives.

That assessment set the stage Oct. 9 for deliberations of a Senate-sponsored commission charged with studying Rhode Island’s past and present system of developmental disability services, with the aim of designing a better future.

At the same time, the chairman of the 19-member panel, Sen. Louis DiPalma, D-Middletown, emphasized that the purpose of the commission is not to assign blame but to learn from the past and present to figure out how to best move forward. The commission must report to the Senate by March 1.

Project Sustainability was “a well-manicured statement to cover up” cuts in funding and services, said Tom Kane, CEO of AccessPoint RI, one of three dozen private agencies serving adults with developmental disabilities in Rhode Island.

Kim Einloth Testifies

Kim Einloth Testifies

Project Sustainability had a “major impact on the quality of service we were able to deliver,” said Kim Einloth, a senior director at Perspectives Corporation, one of Rhode Island’s largest service providers. She said the community-based program of day services was forced to put people in large groups, lay off specialists like occupational and speech therapists and discontinue consulting services with physical therapists.

Gloria Quinn, executive director of West Bay Residential Services, said she noticed immediately that the disabilities system was “demoralized, decreased and degraded” when she returned to Rhode Island after a nine-year absence in 2013. When Quinn moved out of state in 2004, she said, Rhode Island was one of the top-ranked states nationwide for its programs for adults with developmental disabilities. Quinn sits on the commission.

In a meeting that lasted about 90 minutes, the commission covered a broad range of topics related to Project Sustainability and the controversies linked to it: inadequate overall funding, depressed worker wages, and an assessment used – or misused - to determine individual allocations for services.

The planning and execution of Project Sustainability has been well documented, primarily by Burns & Associates, healthcare consultants hired by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) in 2010.

DiPalma said that from what he’s seen, Burns & Associates was “charged with providing a plan, and the state chose to do something different.”

Rebecca Boss, the current director of BHDDH, reviewed the history of Project Sustainability, designed to bring uniformity to funding for specific services and enable families to make informed choices about services. Project Sustainability aimed to use data gathered through new funding methods to create incentives for services to be delivered in the most integrated setting possible, she said.

“Change is hard, and even with perfect planning, it would not result in everyone’s needs being met,” Boss said.

“I think everyone knows” that the current administration – including Governor Gina Raimondo, Kerri Zanchi, the Director of Developmental Disabilities, herself, “is committed to working with our stakeholders” to figure out “where do we go from here,” said Boss.

“Many may have different views of history, as is often the case,” said Boss, a commission member.

Kane, of AccessPoint, said he didn’t want his anger about Project Sustainability to reflect the way he regards the current administration. The working relationship service providers now have with the BHDDH administration, he said, is “better than we’ve had in a very, very long time.”

Tom Kane Chats After The Commission Meeting

Tom Kane Chats After The Commission Meeting

The plans for Project Sustainability “talked about individualizing services and moving toward person-centeredness and all of the lovely buzz words,” said Kane, but the rhetoric really described “a system we already had that got dismantled.”

While Project Sustainability talked about individualization, inclusion and community support, the regulations governing developmental disability services “were always about center-based group activity.”

“Finally, under this administration, the regulations have been put forward that will put back the flexibility we need,” Kane said. The new regulations have passed a public comment period and are to be finalized by the end of the year.

Funding, however, has a long way to go to support the kinds of changes providers, families, and consumers want, by all accounts.

Commission member Andrew McQuaide zeroed in on historical funding of developmental disability services.

McQuaide said that developmental disability spending had been on a downward trend in Rhode Island since 1993.That was the year before the last residents left the Ladd School, the state’s only institution for those with intellectual challenges.

Citing According to Burns & Associates, McQuaide said:

  • Between 1993 and 2008, Rhode Island’s expenditures for developmental disabilities decreased by 29.5 percent at the same time the national rate increased by 17.8 percent.

  • Rhode Island is only one of 14 states to report a reduction between 2007 and 2009 in per-person expenditure, a decrease of 4 percent at the same time the national trend registered a 5.6 percent increase.

McQuaide also said that anecdotal information indicates about half the state’s private providers were reporting operating deficits in 2009, ill-preparing them to absorb the additional funding cuts that came along with Project Sustainability.

An overview prepared by the Senate Fiscal Office showed that actual spending on developmental disabilities, including both state and federal Medicaid funds, dropped $26.2 million in the fiscal year that began July 1, 2011 when compared to spending during the previous 12 months.

The overview shows that, adjusted for inflation, the current budget still has not caught up to the spending reach of the developmental disability system in the year before Project Sustainability was enacted.

Chart courtesy of RI SENATE FISCAL OFFICE

Chart courtesy of RI SENATE FISCAL OFFICE

Prior to Project Sustainability, private agencies negotiated an annual sum for each individual in their care.

The new system generated standard reimbursement rates for each of 18 different services that agencies were authorized to provide.

Kane noted that from the outset, the funding for Project Sustainability was not designed to cover all of the actual costs of private providers, almost all of whom had submitted extensive financial data to the state.

A BHDDH memo for rate-setting that the department sent to the General Assembly noted that the reimbursement rates eventually adopted for Project Sustainability were 17 to 19 percent below “benchmark rates” which Burns & Associates calculated from the median wage for direct care jobs - $13.97 an hour.

The state could not afford more, the memo said, citing the poor economy at the time.

The memo said the lower reimbursement rates were calculated by reducing the allowances for fringe benefits for workers and in some cases, cutting transportation and program expenses.

Kane, who is familiar with the rates in the memo and other Burns & Associates documents, said providers were “actually told in a meeting, ’We’ll see what this (the benchmark wage) costs but we won’t actually bring this to the legislature because they’ll laugh at us.’

“I don’t understand why the expenditure of well over a million dollars on Burns & Associates wasn’t taken seriously enough” to put forward actual expenditures “and let the legislature decide whether it was appropriate,” Kane said.

McQuaide, meanwhile, quoted from the memo. “We did not reduce our assumptions for the level of staffing hours required to serve individuals. In other words, we are forcing the providers to stretch their dollars without compromising the level of services to individuals,” the memo said. See related article

McQuaide said the experience of the last seven years has shown that it was a “fiction” to think the system of private providers would be forced to implement Project Sustainability without compromising services.

The state has a separate system of group homes for adults with developmental disabilities which has not been subject to rules or the pay cuts that came with Project Sustainability. Instead, the workers are unionized state employees with full benefits.

Donna Martin and Andrew McQuaide

Donna Martin and Andrew McQuaide

In the privately-run system, McQuaide said, the wages paid direct care workers still don’t reach the original $13.97 per hour “benchmark”, or median-pay rate, calculated by Burns & Associates.

The most recent data available indicates that the average entry wage for direct care workers is $11.37 an hour. It comes from a survey of member agencies of the Community Provider Network of Rhode Island (CPNRI) conducted last February, according to Donna Martin, executive director of the trade association, which represents about two thirds of service providers in Rhode Island. Martin said she is in the process of updating the figure.

Martin, a commission member, told the panel that CPNRI has met with the BHDDH leadership and representatives of Governor Raimondo’s office and the Office of Management and Budget to review current provider reimbursements in comparison to an extensive menu of rates envisioned by Burns & Associates in planning Project Sustainability. BHDDH, OMB, and the Governor have already planning a budget proposal for the next fiscal year.

DiPalma said Burns & Associates originally wanted to advance a “competitive” average wage of $15.46 an hour.

Addressing wage inequities will be a critical focus of the commission’s work, he said. Two years ago, DiPalma started a campaign to raise direct care wages to $15 an hour over five budget cycles. Massachusetts already pays its direct care workers a $15 hourly rate, and many Rhode Islanders find they don’t have to move to take advantage of these higher-paying positions at agencies that are an easy commute from their homes, DiPalma said.

Another source of rancor over the last several years has been the assessment used to determine individual funding levels under the terms of Project Sustainability – the Supports Intensity Scale (SIS), which was updated in November, 2016.

Kane has said data compiled by Burns & Associates indicate the original version of the SIS was used to cut individual funding. See related article

A. Anthony Antosh

A. Anthony Antosh

Even though the SIS has been revised, the state’s top academic researcher in developmental disabilities, A. Anthony Antosh, told the commission that using the SIS as a funding tool violates the original intent of the instrument as an aid for professionals designing individual programs of support for persons with disabilities.

Antosh, a commission member, is the retiring Director of the Sherlock Center on Disabilities at Rhode Island College.

His comments apparently prompted Kane to recall another moment in a Project Sustainability planning meeting in which Burns & Associates’ human services partner praised the multi-faceted assessment providers were using at the time to figure out how much funding a particular person needed. In each case, the assessment took into account intellectual capacity, responses in various situations and potential risks.

That Burns & Associates partner, the Human Services Research Institute of Oregon, wrote a memo to the General Assembly saying that “ ‘resource allocation’ should never be thought of as mostly an exercise involving the assessment and simple service delivery.”

Policy makers should also take into account the goals of the programs, such as increasing community integration or increasing employment, before determining the array of services and rate schedules, HSRI said.

“Data collected by a measure such as the SIS is necessary,” the memo said, “but certainly not sufficient.”

The memo was condensed before it reached the General Assembly, and the recommendation against using the SIS alone to determine individual funding was eliminated,

RI House Finance Committee Recommends Restoring DD Services To Current Levels

By Gina Macris

RI HOUSE SPEAKER Nicholas A. Mattiello  

RI HOUSE SPEAKER Nicholas A. Mattiello  

In a midnight session June 8, the Rhode Island House Finance Committee added nearly $18 million to Governor Gina Raimondo’s original budget proposal for developmental disabilities in the fiscal year beginning July 1.

Both the House and Senate leadership and the governor herself supported increased funding for developmental disabilities after better-than-expected revenue projections were announced May 10.

The additional funding, all Medicaid money, includes about $8.8 million in state revenue and the remainder from federal funds, according to documents prepared by the House fiscal staff. The Finance Committee’s budget raised Raimondo’s bottom line for developmental disabilities from $250.8 million to $271.4 million. The state’s share would be $126.3 million.

Raimondo’s original budget would not have allowed the state to continue to implement a 2014 federal consent decree designed to correct violations of the Americans With Disabilities Act, according to an independent court monitor, who had been prepared to make recommendations to the judge in the case to ensure adequate funding.

The overall $9.55 billion statewide package passed the House Finance Committee, mostly along party lines without debate, on a vote of 15-3. Opposed were Republicans Patricia Morgan, a gubernatorial candidate representing West Warwick, Warwick, and Coventry,  Antonio Giarrusso, representing East Greenwich and West Greenwich, and Robert Quattrocchi, representing Scituate and Cranston.

The measure is slated to go before the full house June 15, and Chairman Marvin Abney-D-Newport, said there would be plenty of debate on the House floor.

 As it now stands, the budget maintains the level of developmental disability services at current reimbursement rates to private providers. The Finance Committee did not reverse a $3 million cut to the state-run group home system imposed by the Governor, and it does not improve wages for direct care workers, as has been the practice in the last three budgets.

Direct care workers in developmental disability services make significantly less than their counterparts in Massachusetts and Connecticut.

Providers say they struggle to recruit, train and keep qualified employees, who often go to neighboring states or leave the field entirely. 

In a briefing with reporters before the Finance Committee convened, House Speaker Nicholas A. Mattiello said the budget did not go further in addressing needs of the Division of Developmental Disabilities because of the necessity to restore funding in many human service areas.

“We were thinking of all segments of society and balanced it as well as we can,” he said. “We took care of our economy, and we took care of our citizens.”

The Finance Committee added $15.7 million payments for hospitals and another $17.2 million to the Department of Children, Youth and Families for services for children and teenagers in state care. Some of the added DCYF funding would provide for older teens who choose to receive services until age 21 – an option that has been unavailable in recent years.

The House Finance Committee also granted a 10 percent rate hike to in-home caregivers of the elderly and disabled. Most of the individuals served by those workers do not have developmental disabilities, according to Sharon Reynolds Ferland, the House Fiscal Advisor. But Mattiello said there are significant savings to the state in keeping those individuals out of nursing homes.

The revised budget also reversed Raimondo’s plan to require Medicaid patients to shoulder co-pays for health care, although the original proposal was not designed to affect individuals with disabilities.

Just as the Finance Committee increased Medicaid reimbursement rates to hospitals to make them competitive with Massachusetts and Connecticut, Mattiello said, he believes wages for direct care workers probably should be raised to keep them in Rhode Island.

“Yes, I do believe we have to look at those rates,” he said in response to a question about the wages. He said direct care wages “should probably be increased but there’s so much resources, and when you run out, you run out.”

Mattiello held out the hope that direct care worker wages in developmental disabilities would be revisited next year.

He said he wants to continue to increase resources for developmental disabilities, “but that increase is incremental and slower than we would like.”

“We’re continuing to work on improving our economy so we can continue to work on the needs of society and balance those needs,” Mattiello said.

While the House leadership usually drives the budget, the Senate will weigh in after the package clears the lower chamber.

Court Monitor Says Court Order Not Needed To Ensure RI DD Funding; State Budget To Move Forward Thursday In House Finance Committee

By Gina Macris

An independent court monitor has advised a federal judge that a court order isn’t necessary to ensure adequate funding and staffing for Rhode Island’s developmental disability services.

In a June 1 report to Judge John J. McConnell, Jr. of U.S. District Court, the monitor, Charles Moseley, cited recent assurances from Governor Gina Raimondo that revisions will be made to the state budget for the fiscal year beginning July 1 to enable the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) to continue implementing a 2014 consent decree correcting violations of the Americans With Disabilities Act (ADA.)  

After a positive report from the semi-annual Revenue Estimating Conference May 10, House Speaker Nicholas A. Mattiello and Senate President Dominick J. Ruggerio took the lead in promising to restore $18.4 million in reimbursements to private service providers that Raimondo had originally eliminated from her budget proposal for the fiscal year beginning July 1.  Raimondo's original proposal had been unacceptable to Moseley, who had told McConnell in April that the cut would leave BHDDH unable to maintain consent decree reforms.  

The May  Revenue Estimating Conference concluded the state would take in a total of $135 million more than had been previously projected to close out the existing budget and to fund the next one, but Mattiello warned that extra cash should not be viewed as a panacea, because of multiple demands on the state’s resources.

Those obligations could include an estimated $24 million in federal and state Medicaid funds the state has not budgeted for retroactive payments to nursing homes. Whether the state must make those payments is wrapped up in a lawsuit brought by nursing home operators in state court over reductions in reimbursements imposed by the Raimondo administration.

The nursing homes prevailed in the litigation and the state failed to file a timely appeal, with the administration blaming a lawyer at the Executive Office of Health and Human Services who simply missed a May 23 filing deadline. The state is now trying to convince the judge in the case to accept an appeal anyway.  

Payments to nursing homes would eat up about $12 million in state revenue, or 8 percent of the $135 million in extra state revenue lawmakers had been planning to use to fill holes in the budget – including reimbursements to private providers of developmental disability services. (The remainder of the retroactive payments would come from the federal government's share of the Medicaid program.) 

The revised budget is scheduled to go before the House Finance Committee the evening of Thursday, June 7.

Besides an enhanced bottom line on funding, the court monitor will be looking for the addition of three BHDDH employees to staff a quality improvement unit which is deemed critical to ensuring that current and future reforms adhere to consent decree standards.

It is not immediately clear how those three added staffers would be used. As late as the first week of May, the monitor and BHDDH officials had been at odds about both the number of officials needed in the quality improvement unit and their respective roles.   

The consent decree gets its authority from the 1999 Olmstead decision of the U.S. Supreme Court, which ruled that Title II of the ADA requires services for disabled individuals to be offered in the least restrictive environment that is therapeutically appropriate. That environment is presumed to be the community.

In 2014, the U.S. Department of Justice cited Rhode Island’s overreliance on sheltered workshops and adult day care programs as violations of  Title II of the ADA. In the consent decree, the state agreed to ten years of federal oversight while it transforms the segregated system of daytime services to an integrated one based in the community.

This article has been corrected to show that, depending on a judge's final ruling, half of an unbudgeted $24 million in retroactive payments to Rhode Island nursing home operators would come from state revenue.

RI Gov Pledges To Support "Current Level" Of DD Services In FY 19; No Fiscal Details Yet

By Gina Macris

Rhode Island Governor Gina Raimondo says her administration is committed to maintaining “the current level of services” for adults with developmental disabilities in order to meet the demands of a 2014 consent decree between the state and federal government.

But in a letter to a federal court monitor in the consent decree case, the governor did not spell out how much money the administration believes the state should spend.

The consent decree is a 2014 agreement between the state and the U.S. Department of Justice (DOJ) which requires Rhode Island to correct violations of the Americans With Disabilities Act by enabling adults with intellectual or developmental challenges to seek competitive employment and enjoy community-based, integrated non-work activities.

In the letter to the monitor, Raimondo wrote: “I will continue to work collaboratively with the General Assembly on all funding recommendations, including those supporting efforts under the Consent Decree.”  

Following better-than-expected revenue projections issued May 10, both House and Senate leaders said that at a minimum, they support restoration of an $18.4 million reduction in reimbursements to private service providers that Raimondo has proposed for the budget cycle beginning July 1.

The consent decree monitor, Charles Moseley, had sought three specific assurances from Raimondo, in the form of a letter or statement to U.S. District Court Judge John J. McConnell Jr.

Moseley asked that the letter or statement say that the budget would:

  •  “be re-set to reflect current FY 2018 expenditure and service levels”
  •  “continue to be revised throughout FY 2019 as needed to fully fund the provision of services”           consistent with requirements of the consent decree
  •  provide “sufficient personnel resources” to the Division of Developmental Disabilities to   “carry out  quality improvement activities consistent with Consent Decree requirements.”

Raimondo’s letter to Moseley, dated May 14, contains no details about any budget changes she may be planning. Nor does it mention quality improvement activities. 

On May 18, a spokeswoman for Raimondo said that “increasing funding for developmental disability support services is one shared priority for which she (the governor) continues to advocate as we further engage in discussions with the General Assembly about the final budget."

Asked whether the governor supports the employment of adults with disabilities as one of the state's workforce solutions, the governor's spokeswoman pointed out the new Real Pathways RI program. It is a workforce investment initiative that focuses on job-seekers who face various barriers to employment. Among the public, private, and non-profit organizations that participate in the program are four providers of developmental disability services, who are working with Home Depot and CVS to match their clients to jobs. 

Moseley had requested a statement from the governor on her position as he prepared to make recommendations to McConnell about what court action, if any, might be needed to ensure that compliance with the consent decree moves forward.

At the most recent court hearing April 10, the judge directed Moseley to find out if there was consensus among state officials and DOJ lawyers about a course of action the court might take to ensure enough funding. Failing such an agreement, McConnell said, he would hold an evidentiary hearing to lay the groundwork for a court order.

Moseley has concluded that Raimondo’s proposed budget, as it now stands, is insufficient to continue to support the modest salary increases to direct support workers put forward by Raimondo and approved by the General Assembly in the last two years. In addition, it would not allow the state to “continue services at current levels,” he said.

The monitor described his efforts to get a sense of the state’s position a  letter to Eric Beane, the Secretary of Health and Human Services, dated May 9. That was a day before the state’s revenue estimating conference concluded that revenues were projected to exceed previous estimates by $135 million through the end of Fiscal 2019.

A week earlier, on May 2, the director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) did not dispute the monitor’s conclusions about the inadequacy of the proposed budget for the next fiscal year, Moseley wrote to Beane.

But the director, Rebecca Boss, “affirmed governor’s commitment to fully fund Consent Decree activities during FY (Fiscal Year) 19 and said that no rate cuts in reimbursements or spending reductions were being proposed,” according to Moseley.

“She noted that the Governor had demonstrated a history of including supplemental funding to the DD (developmental disabilities) services budget when expenditures exceeded enacted amounts and would continue to do so if necessary,”  Moseley wrote.

On separate occasions, both Boss and Beane said assurances about the state’s support of the consent decree could be sought from the governor, Moseley recalled.

For some time, Moseley has said that the Division of Developmental Disabilities needs four fulltime inspectors to conduct onsite reviews of all three dozen private service providers every two years and to ensure their services meet the standards of the consent decree.

He said Kerri Zanchi, director of developmental disabilities, and Kevin Savage, the BHDDH licensing administrator, “argued strongly” during a meeting with Moseley May 2 that two inspectors, or “surveyors” as they will be called, “would be sufficient to meet the need and ensure compliance” along with an data analyst and “other measures.”  Zanchi was to provide a subsequent written analysis of the rationale for the BHDDH approach.

In an earlier report to the monitor, BHDDH officials explained their plan for a centralized, departmental quality assurance unit. In the first year, the two surveyors would be supervised by Anne LeClerc, Associate Director of Program Performance in the Division of Developmental Disabilities, which is also to have the benefit of its own data analyst and a divisional operations manager.

In this initial year, the new “surveyors” will enable the division to rigorously analyze the effectiveness of its existing day services to better plan for future improvements, according to the state’s report to the monitor April 30.

In the second year, however, the surveyors will be assigned to a centralized quality management unit to connect the BHDDH investigatory unit with licensing and certification of private service providers, according to the state’s quarterly report. 

Raimondo's spokeswoman said she supports the BHDDH quality improvement plan. 

To date, there have been no filings in the court record indicating what Moseley will recommend to the judge.

To read Governor Raimondo's letter to the consent decree monitor, click here.

To read the consent decree monitor's letter to the Secretary of Health and Human Services click here.

RI Speaker: General Assembly Likely To Reverse $18 M Cut In DD Services Proposed By Governor

By Gina Macris 

It is likely the General Assembly will restore about $18 million in proposed cuts to private providers of developmental disability services in the budget cycle that begins July 1,” Rhode Island House Speaker Nicholas A. Mattiello said May 10.

In a video interview published by GoLocal Prov, Mattiello said:

“We have about $18 million in proposed cuts to the developmentally disabled community. I don’t want to speak for everybody, but I’m certainly going to strongly advocate for giving the money back and restoring it. I don’t think that’s an appropriate place to go for your cuts. And we were always planning on restoring those funds. I think that thinking is pretty universal.”

Mattiello was interviewed at the conclusion of the May Revenue Estimating Conference, which indicated revenues are running about $130 million to $135 million ahead of estimates for the current fiscal year and the next one, according to slightly differing preliminary news reports.  An official statement was not immediately available.

A spokesman for Mattiello added that the “budget will be finalized in the coming weeks, and there are no firm numbers yet, but the Speaker is committed to addressing the developmental disabilities issue in the budget.”

The chairman of the Senate Finance Committee, Sen. William J. Conley,Jr., D-East Providence and Pawtucket, has taken a firm stand against the $18 million reduction in reimbursements to private providers proposed by Governor Gina Raimondo in January.

During a Senate Finance Committee hearing May 3, Conley framed the budgetary issue in terms of the civil rights of adults with developmental disabilities to have the assistance they need to enjoy services in their communities as spelled out in the Olmstead decision of the U.S. Supreme Court.

And that day for the first time, Rebecca Boss, director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals(BHDDH), acknowledged that governor’s recommended budget for the fiscal year beginning July 1 would not allow the state to continue its compliance efforts with a 2014 federal consent decree based on the Olmstead decision.

For the fiscal year beginning July 1, Raimondo has proposed $250.8 million for developmental disabilities. That figure is $6.1 million less than the bottom line enacted by the General Assembly for the current fiscal year and a total of $21.4 million less than current spending levels.  Raimondo’s budget proposal would raise the current spending limit from $256.9 million to $272.2 million for the fiscal year ending June 30 to cover a cost overrun, treating it as a one-time event.  

In the BHDDH budget request to the governor last fall, Boss asked for a total of $278.8 million for developmental disabilities beginning July 1.

U.S. District Court Judge John J. McConnell, Jr., who presides over implementation of the consent decree, has made it clear over the last six months that he has a keen interest in the funding issue.

At the most court recent hearing April 10, an independent court monitor said he would draft recommendations for a proposed court order to ensure compliance with the consent decree

The monitor, Charles Moseley, was to first consult with the state and the U.S. Department of Justice to see if they could all reach consensus on the recommendations. Moseley’s report to the judge has not yet appeared in the court file.

But McConnell has received a letter from a parent asking him to “stop the governor’s plan to cut $18 million from I/DD (intellectual and developmental disabilities) services.”

Chris Torgovec has a son with autism who is living in a group home and has started to work a few hours a week “so he is doing well there, but I’m afraid of what could happen if these services would go away.

“It would not be a good thing for anyone. I’m sure there are other places to make cuts but not to people that actually need help, “ Torgovec said.

RI Senate Finance, BHDDH To Seek More Funding To Protect Services And Rights Of Adults with DD

By Gina Macris

Governor Gina Raimondo’s proposed $18.4 million cut to developmental disability services for the next fiscal year would not allow Rhode Island to continue its compliance efforts in connection with a 2014 federal consent decree, Rebecca Boss acknowledged for the first time during a budget hearing before the Senate Finance Committee on May 3.  

Boss - RI CApitol tv

Boss - RI CApitol tv

Boss is the highest ranking official in the Raimondo administration responsible for adults with developmental disabilities in her position as the director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).  

Her admission came in response to the finance committee chairman, Sen. William J. Conley, Jr., who laid out a detailed and persistent line of questioning that revealed an authoritative grasp of the issues of the the consent decree and established him as a leading advocate for expanding the developmental disabilities budget.  

Boss said in initial remarks that based on an “updated data analysis of monthly caseloads and more positive revenue trends, we will be advocating for increased funding for BHDDH so Rhode Islanders’ needs are met.”

Conley - RI CAPITOL TV 

Conley - RI CAPITOL TV 

But Conley asked her to revisit a specific question about funding that had first been posed to her by U.S. District Court Judge John J. McConnell, Jr. during a hearing April 10. McConnell asked whether the proposed $18.4 million cut in reimbursements to private providers effective July 1 would affect the state’s ability to move forward with compliance efforts related to the consent decree.

At the time, Boss said BHDDH did not have enough data to give an answer.

Conley said the consent decree “does nothing more, quite frankly, than require the same standards that the U.S. Supreme Court established in 1999.”

The so-called Olmstead decision clarified the integration mandate of the Americans With Disabilities Act, spelling out the rights of all individuals with disabilities to choose services that are part of their communities.    

Nearly 20 years after the Olmstead decision, Rhode Island is “still struggling to meet a constitutional standard of care,” Conley said.

“Four years after the consent decree was entered and after repeated court monitor reports, we still cannot answer the question as to whether or not we are providing sufficient resources, really, to provide justice and dignity to the people with intellectual and developmental disabilities in the state of Rhode Island.”

“While I understand you have to represent the voice of the administration, and everybody expects you to be a loyal soldier and team player, the budget that you are giving us doesn’t do that,” Conley said, addressing Boss.

Otherwise, Boss would have been able to clearly answer the judge that the loss of $18 million would not affect progress on the consent decree and would have been able to spell out how its goals would be achieved with the remaining funds, Conley said.

When Conley asked what the Senate Finance Committee could do to help BHDDH, Boss and the Director of Developmental Disabilities, Kerri Zanchi, both said members could advocate for more flexibility for the department to assign resources.

Boss said she agreed that the department needs more resources but wasn’t sure that the prescriptive nature of the consent decree was the best approach.

But Conley replied said that when the state isn’t meeting the standards, or doesn’t have the data to show its progress – a problem since 2014 – “the default position is prescriptive standards, because they need some kind of measuring stick.”

One measure is whether the “proposed budget would provide the level of services that are constitutionally mandated,” Conley said.

“What’s your answer today?” he asked, bringing the discussion full circle back to the judge’s question.  

Boss said, “With the revised analytics done, we could say today that the budget proposed would not continue the service delivery” in the current fiscal year.  The consent decree requires an increase in commitment during each year of implementation. equired by the consent decree.

While Boss did not offer a figure, Sen. Louis D. DiPalma, D-Middletown, the first vice-chairman of the committee, said developmental disabilities would need about $275 million to $280 million in federal and state funding during the next fiscal year, based on the original budget request the department made to the Governor’s office last fall.

DiPalma presented a chart showing that actual funding for developmental disabilities has lagged behind inflation since July 1, 2011, which marked the introduction of “Project Sustainability,” the current fee-for service reimbursement system that has come under increasing criticism for imposing restrictions on providers – and the state bureaucracy – in implementing the consent decree.

For example, the chart shows that the $239.8 million allocated for developmental disabilities effective July 1, 2010 would be the equivalent of $274.5 million allocated effective July 1, 2018, the start of the next fiscal year, with an adjustment for inflation according to the consumer price index.

Raimondo’s proposal, as it now stands, would allocate only $248.1 million effective July 1, counting only the federal-state Medicaid funding. (Other miscellaneous funds would add slightly more than $2 million to the bottom line.)

The Senate on May 1 gave final approval to a resolution creating a special commission to study the reimbursement system under Project Sustainability, including the use of a standardized assessment tool keyed to a funding formula that has never been disclosed. The commission has until March 1, 2019 to issue its report.

Sen. Walter S. Felag, Jr., D-Warren, Bristol and Tiverton, said he favors fully funding developmental disabilities.

He said it seems that in the last eight to ten years, there has been “tremendous pressure” to decrease these expenditures,” with particular challenges on residential costs from 2013 to 2017 as BHDDH has tried to move people out of group homes to less expensive shared living arrangements.  He questioned whether it has been all worthwhile.

Boss said there have been investments in developmental disabilities in that time, and Conley remarked that Boss and her staff are doing “tremendous work” with the resources they do have.

Beth Upham put a parent’s perspective on services. Her daughter, Stacy, a resident of a group home with an active calendar, “has a life we never could have given her,” she said.

She said she has met with Governor Raimondo, who has “promised she would support this community.”

But if the governor’s existing budget proposal is enacted, Upham said, “every person in the system will suffer. They will be sicker. There will be more hospitalizations. My daughter, my baby girl, will suffer,” Upham said.

“We have been fighting this system ever since she turned 21,” Upham said.

She asked, “why, for the last 15 years, has this community been targeted for cuts?”

DiPalma: RI Must Invest In Transformation of DD Services To Protect Most Vulnerable

By Louis P. DiPalma

DiPalma headshot

The Rhode Island Division of Developmental Disabilities (DDD) in the Department of Behavioral Health, Developmental Disabilities, and Hospitals (BHDDH) is undergoing a significant transformation, much like Department of Children, Youth and Families. This transformation requires financial investment to succeed, not the proposed cuts.

As legislators, we must work to ensure we invest in the most vulnerable populations in our state, including the more than 4,000 individuals living with intellectual/ developmental disabilities (I/DD) who are served by BHDDH-DDD.

From a programs perspective, there are at least two critical elements of transformation the agency is undertaking. The first element is required by the 10-year 2014 consent decree settlement with the Department of Justice for violation of the civil rights of individuals with I/DD. The state, currently in its fourth year of transformation, is now under a court order.

The key focus of this transformational initiative is to transition individuals with I/DD from working in sheltered workshops to integrated employment and community-based programming. And, while the state is making progress in many areas, there is still a need for increased focus and attention.

When all is said and done, in 2024, successfully achieving the goals of the Consent Decree will require approximately $25 million in annual state and federal funding. The Department of Justice is closely monitoring our investments and commitment to reforming our practices toward full inclusion of individuals with disabilities in local communities and businesses. We must invest and commit to the ideals of inclusion for individuals with I/DD.

Another critical element of transformation is the transition of individuals with I/DD from living in group homes to alternative living arrangements, such as shared living arrangements. This transformational, voluntary program, when fully implemented, will require less funding than what is currently needed to support the same individuals in group homes.

The state is making progress in ensuring new DD clients who enter the system have the opportunity to live independently with supports, though challenges remain. During this multi-year transition, the agency will be required to sustain and maintain both systems, necessitating additional investment for multiple years, including in additional personnel. Without it, the transition will not be successful, individuals will not be in the most appropriate settings, and the savings would be unrealized.

Gov. Gina Raimondo has committed to new leadership for BHDDH and DDD to lead this transformation, and progress is being made. However, we are at a point in the transformation that requires investment in the division and the services they fund.

A review of the proposed budgets for the BHDDH-DDD, shows a revised current year budget, including general revenue and federal funding, of $269 million and the proposed fiscal year 2019 budget of $248 million, a reduction of $21 million.

A $21 million reduction in funding at a time when investments are needed. As a legislator, I appreciate the challenge the governor is confronting, especially in light of our structural deficit. Any increases in revenues should be invested in Rhode Island’s most vulnerable citizens, including individuals living with I/DD. It is the right thing to do, and it will help continue progress toward system transformation and compliance with the consent decree.

President Franklin D. Roosevelt said it best: “The test of our progress is not whether we add more to the abundance of those who have much; it is whether we provide enough for those who have little.”

Louis P. DiPalma, a Rhode Island state senator, is a Democrat serving Newport, Middletown, Little Compton, and Tiverton

RI DD Advocates Warn Of 'Massive Retrenchment' From Proposed $21.4 Million Spending Reduction

                                                                      &nbs…

                                                                                                                                                                                                                                                                           All Photos by Anne Peters

Donna Martin, executive director of the Community Provider Network of Rhode Island,  speaks during the Day Of Action, sponsored by the provider network. Standing, l to r, are Rep. Deborah Ruggiero, (D-Jamestown and Middletown); Rep. Dennis M. Canario, (D-Portsmouth, Little Compton and Tiverton), and Rep. Teresa A. Tanzi, (D-Narragansett and South Kingstown.  Seated on the steps below the State House Rotunda are advocates representing the service provider Spurwink RI. 

By Gina Macris

Rhode Island would see a “massive retrenchment” in services for adults with developmental disabilities if Governor Gina Raimondo’s proposed budget is enacted for the next fiscal year, a spokeswoman for providers told members of the House Finance Committee at a hearing March 29.

Pam Goes 

Pam Goes 

In human terms, Raimondo’s plan to cut $21.4 million from current spending levels would diminish the quality of life for some 4,000 individuals whose care is already undercut by low wages and high turnover among caregivers, said Pam Goes of Warwick, who has two sons with developmental disabilities, including one who cannot express his needs verbally. 

Goes delivered the same message at a “Day of Action” in commemoration of March as Developmental Disability Awareness Month under the State House Rotunda in mid-afternoon as scores of adults with disabilities and their supporters lined the steps leading to the House and Senate.  

State Sen. Louis DiPalma, D-Middletown, told the crowd that “people with developmental disabilities have the ability to lead a full and prosperous life. That’s why I’m here.'

Rep. Teresa Tanzi, D-Narraganset and South Kingstown, said that for the compassionate work they do, the wages of direct care workers are an “injustice.”

Tanzi, who chairs the Human Services Subcommitte of the House Finance Committee, presided over the budget hearing later in the afternoon.

Of the overall $21.4 million reduction from current spending levels in the next fiscal year, $18.4 million would come from private the agencies that provide most of the services and $3 million would be taken from a state-operated system of group homes.

Martin, executive director of the Community Provider Network of Rhode Island (CPNRI), did not mince words when she addressed Tanzi and other members of the House Finance Subcommittee.

She said “there is no way” that service providers will be able continue efforts to comply with new federal Medicaid regulations requiring integrated, community-based services and a 2014 federal consent decree that focuses on competitive employment for adults with developmental disabilities.

Needed Changes Are "Not Going To Happen" 

Compliance with the 2014 consent decree and the new Medicaid regulations, called the Home and Community Based Final Rule, depends on system-wide changes in the manner of care, and “that’s not going to happen” with an $18 million cut to private service providers, Martin said.

Instead, there will be a “tremendous reduction” in services, she said, with agencies forced to prioritize the health and safety individuals in their care. Employment –related services and the services necessary to provide community integration will suffer if the agencies must absorb an $18 million, Martin said. Workers’ hours and wages – which hover slightly above minimum wage – would be cut.

David Reiss, CEO of the Fogarty Center, the largest non-profit service provider in the state, said the agency simply cannot survive if the state imposes the $18.4 million reduction across the board. It represents about a 7 percent cut in spending. 

Reiss said he has closed five group homes in the past year, not because of a lack of demand but because he couldn’t find enough workers to staff them. Staff turnover is about 40 percent, he said. 

The starting wage at the Fogarty Center is $10.50 an hour, he said. Although the General Assembly has raised the pay for direct care workers slightly in the past two years, the minimum wage also has increased. It is now $10.10 and is scheduled to go up again next January to $10.50 an hour. Massachusetts has an $11.00 minimum wage and has agreed to pay direct care workers a minimum of $15 an hour beginning in July.

Raimondo’s budget includes no money for raising the wages of direct care workers this year, although a bill in the legislature would link increases in the minimum wage to raises for front-line staff, according to Martin, the CPNRI director.

High Staff Turnover Worries Parents

Pam Goes, the Warwick mother, discussed the impact of the high staff turnover on her non-verbal son.

“We feel like we are constantly starting over,” she said. Her son Paul needs to trust his caregiver, and that trust comes only with time and continuity of high quality care.

“It’s a difficult job for them to be on top of his moods ,” she said. “You need to get to know him,” she said. Paul will often test new staff to see how much he can get away with, she said, and he can become aggressive.

“I worry that there are so many people in and out of his life,” she said. “I worry that his communication is so limited. I especially worry about what happens when I’m gone,” she said.

“I want to advocate for a sustainable system where people live a good life,” she said. “It’s a lot of stress knowing the situation could become more untenable.”

About four thousand people receive services, she said, and “every family has a story like mine.”

Tom Kane, the CEO of AccessPoint Rhode Island, said Goes reminded him of the best compliment his agency ever received: “The work you did for our son allowed us to be the family we wanted to be."

A Call For More Funding

The budget is “about priorities. It’s about morality, and it’s about people” he said. “It should be about people.”

Kane called on the legislators to approve a proposed $15.3 million budget increase to cover cost overruns in the current fiscal year, as Raimondo has proposed, and then to add another $15 million in the budget cycle beginning July 1 to deal with a structural deficit and allow some growth.

Raimondo’s budget proposal does not acknowledge the structural deficit, he said. Instead her plan only temporarily grants additional funding, only to take it away in the next fiscal year.

The General Assembly approved total spending of $256.9 million for the current fiscal year. Raiimondo’s proposal would increase that figure to to $272.2 million. But in the fiscal year beginning July 1, her bottom line would drop to  $250.8 million. That figure is  $6.1 million less than the enacted budget and $21.4 million less than the temporary budget expansion Raimondo has proposed through June 30.

Kane presented figures which showed Rhode Island spends significantly less on adults with developmental disabilities than neighboring Massachusetts and Rhode Island.

The State of the States in Developmental Disabilities, a research project sponsored by the University of Colorado, tracks residential costs for adults with intellectual challenges. In 2015, the latest year for which data is available, the national average for residents of institutions with 16 or more beds was $256, 400 per person.

  • Massachusetts spent $287,434 per person
  • Connecticut spent $403,496
  • Rhode Island spent nothing in that category. All those who would be in institutions in Massachusetts or Connecticut live in group homes in Rhode Island, Kane pointed out.

The average cost for group homes with six or fewer residents nationwide was $129,233 in 2015, according to the State of the States.

  • Massachusetts spent $170,682 per person
  • Connecticut spent $172,067 per person
  • Rhode Island spent $114,973 per person                                       

Kane said the average per-person cost in Rhode Island is skewed upward by the state-operated system of group homes. According to the House Fiscal Office, the average per-capita cost for 139 residents of the state operated system is $207,251.

In the privately-operated group homes, however, the state spends about $60,000 a year per person, Kane said. Roughly 1200 individuals live in houses run by private agencies like Access Point RI  and the Fogarty Center.

Controversy Continues over Assessment

Kane turned to a discussion of the Supports Intensity Scale, a controversial assessment methodology that uses lengthy interviews to determine the level of services needed by persons with developmental disabilities on a case-by-case basis. It was introduced in 2011, ostensibly to correct “special considerations” for individual clients that state officials said posed a problem because they were driving up costs, Kane said. 

Ironically, he said, the assessment has prompted many more appeals of individual funding than the number of “special considerations” that had been granted previously.

Some people see the assessment as a problem since it was revised in November, 2016, because it has it has led to larger awards, Kane said.  A House fiscal analysis says the new assessment has added $17 million to developmental disability costs in the first 12 months it was used. 

Kane said service providers believe that the results of the original assessment were “manipulated to back into a budget that didn’t accurately reflect the needs of people.”  

The revised assessment, the Supports Intensity Scale – A, is being used “far more appropriately now,” he said.

The House Fiscal Advisor, Linda Haley, noted a “moratorium” in the use of the SIS-A. The director of the agency responsible for developmental disabilities, Rebecca Boss, explained that it was temporary, to allow officials to review their implementation of the revised assessment. 

A total of 46 errors in funding were corrected (see related article) and the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals continues to use the assessment for new entrants and for regularly-scheduled re-evaluations of clients. Boss said.

If an appeal includes documentation of changes in a person’s medical or behavioral needs that are likely to be long term, perhaps as part of the aging process, a client will receive a re-assessment with the SIS-A ahead of schedule, added Kerri Zanchi, Director of the Division of Developmental Disabilities.

Kevin Nerney, a spokesman for the Rhode Island Developmental Disabilities Council, discussed several initiatives that are intended to both improve services in compliance with federal law and cut costs over the long term.

But Rhode Island is not there yet, he said.

“We don’t want to destroy one system (of services) before creating a new one,” Nerney said. “We don’t want to leave people behind based on an arbitrary fiscal goal rather than the needs of people.”

He said he knows that some eligible individuals are unable to find services that fit their needs, alluding to an increase in the number of individuals who are receiving only case management  during the last couple of years. That figure jumped from 451 in 2016 to 643 this year.

“On paper, it may look like savings” for the state, Nerney said, but some of those families “are in crisis.”

 

'Day Of Action' Planned At RI State House To Raise Disability Awareness - And Alarms About Budget

By Gina Macris

Developmental Disabilities Awareness Month, celebrated across the nation, will come to the Rhode Island State House in a “Day of Action” Thursday, March 29.

Adults who face intellectual challenges in daily living plan to celebrate their accomplishments. But they and their supporters also want to raise an alarm about the damage they say proposed budget cuts will cause to the services they need to live full lives.

The “Day of Action” is aimed at lobbying legislators over what advocates say is a looming crisis. Late in the afternoon, after the House adjourns, a subcommittee of the House Finance Committee is scheduled to hear Governor Gina Raimondo’s budget proposal.

The budget would eliminate $18.4 million in current costs from the private service system that supports most adults with developmental disabilities in Rhode Island, says Donna Martin, executive director of the Community Provider Network of Rhode Island (CPNRI), sponsor of the “Day of Action. “

On Thursday evening, Advocates in Action will host a meeting in Warwick that will feature adults with developmental disabilities encouraging their peers to speak up for their right to individualized services that is embedded in the Americans With Disabilities Act (ADA).  (Read related article here.) 

The individualized  approach is inherently costlier than the congregate care Rhode Island has depended on in the past in sheltered workshops and day centers. 

But the right to individual choice is mandated by the state’s 2014 Olmstead consent decree with the U.S. Department of Justice. And the judge in the case, John J. McConnell, Jr. of U.S. District Court, has signaled from the bench that he will be watching budget deliberations.

Among service providers, some officials say privately that their agencies are teetering on the brink of insolvency as a result of several years of underfunding in which the state has failed to cover their costs and they’ve exhausted any reserves they might have had.

The budget, if enacted, would be “untenable,” said the CEO of one service agency, who asked not to be identified publicly.

Family members say the issue is not just about the service agencies.

David and Marcia Graves, parents of a woman with cerebral palsy, said in a statement that the spending cuts “will put the emotional and physical well-being of our daughter and others in jeopardy.”

A drastically reduced budget would make the difficult job of recruiting and retaining qualified direct care workers impossible, the Graveses said in a statement released by the CPNRI.

Raimondo’s calculations suggest that the governor’s office and the developmental disabilities agency, BHDDH, are not reading from the same page of figures.

Martin, the executive director of CPNRI, put it another way. She said that Raimondo’s budget, like the proposals of governors before her, does not address a structural deficit in developmental disabilities, instead continuing a cycle of chronic underfunding and deficit spending.

Here are the numbers:   

The developmental disabilities budget the General Assembly enacted last summer for the current fiscal year allows $256.9 million in spending.

 Raimondo would raise current spending to $272.2 million – an increase of $15.3 million to cover a cost overrun. 

For the fiscal year beginning July 1, Raimondo would drop the bottom line to $250.8 million. The difference would be $21.4 million, including $18.4 million that would come from private providers and $3 million that would come from state-operated group homes.

Viewed another way, Raimondo’s bottom line of $250.8 million is $6.1 million less than the currently authorized spending level of $256.9 million.

All the money comes from the federal-state Medicaid program, with the federal government providing a little more than 50 cents on the dollar.

Budget officials who briefed reporters on Governor Raimondo’s overall fiscal proposal in January emphasized her efforts to close a projected $200 million deficit in the next fiscal year while promising that Medicaid recipients, including those with developmental disabilities, will not see a reduction in services. 

The Office of Management and Budget (OMB), which advises the governor, was asked how it approached BHDDH spending as it set a target for the next fiscal year.

OMB “makes adjustments based on estimated growth rates in the cost of providing services,” said a spokeswoman, but she acknowledged that those estimates did not take into account the current, actual costs.

The spokeswoman said that OMB worked from the $256.8 million budget enacted last year for the existing budget cycle and incorporated “personnel and entitlement adjustments,” like a slight increase in the federal reimbursement rate for state Medicaid expenditures, as well as “certain trend growth rates.”

From there, OMB applied a 10 percent reduction, as it has across the board for all state agencies, to deal with the state’s overall projected $200 million deficit, she said. (Raimondo still found money for new programs.)

One hurdle faced by BHDDH in presenting its case for funding that it is not represented at a twice-yearly meeting at which officials grapple with trends in Medicaid spending, even though the department's services are entirely funded by the federal-state program. 

In November and May, the State Budget Director meets with the fiscal advisers of the House and Senate in the caseload estimating conference to reach consensus on the latest Medicaid expenses and provide updated information for budget projections. 

The law setting up the caseload estimating confernce excludes both BHDDH and the Department of Children, Youth, and Families (DCYF), another agency funded by Medicaid. Companion bills pending in the House and Senate would require both BHDDH and DCYF to participate. 

The most recent caseload estimating conference was in early November, about three weeks after BHDDH submitted its budget to OMB. 

At the time, BHDDH had about a year’s experience with a revised assessment method that determines the individualized level of service authorized for adults with developmental disabilities. The result was an added $17 million in developmental disability costs, according to a report of the House fiscal staff.

Raimondo’s budget summary suggests that BHDDH has been reviewing the validity of the assessment. But BHDDH director Rebecca Boss said in an interview in January that “it’s probably a misnomer to call it a validation of the SIS-A.” She referred to the acronym for the assessment, called the Supports Intensity Scale –A.

The American Association on Intellectual and Developmental Disabilities, the developer of the instrument, “have a scientifically rigorous study that this is a valid tool,” Boss said.

“For us, it was validation of our implementation of the SIS-A, not necessarily the tool itself. It’s a validation of our implementation, and that’s probably a better way to say it,” she said.

BHDDH found 46 cases in which the assessment resulted in individual authorizations that were higher than warranted. Boss said those authorizations were corrected, and all the social workers who do the assessments were retrained in how and when to ask supplemental questions that might lead to higher funding.

“We’re not planning to discontinue using the SIS-A,” she said. “We are planning to make sure we are using it correctly.”

In other words, the prime driver of higher per-person costs for developmental disability services is not going away.

And it will take several years before all adults with developmental disabilities  - some 3700 receiving services - have all been assessed using the new SIS-A.

From 2011 until November, 2016, BHDDH had been using the predecessor to the SIS-A, which was enmeshed in controversy, with accusations by families and providers that assessors humiliated them and the state manipulated results to artificially depress funding authorizations. 

Successful appeals of individual funding allocations cost the state more and more money until the supplemental payments reached a total of about $23 million in the last fiscal year.

The U.S. Department of Justice has criticized the way the state used the original SIS in findings that led to the 2014 consent decree. Two years later, in May, 2016,  the SIS figured in a multi-faceted compliance order issued by Judge McConnell.

He said state policy must require all assessments to be conducted “in a manner that is consistent with individuals’ support needs, separate and apart from resource allocations.”

Six months later, the state inaugurated the SIS-A. Martin, the CPNRI director, said her membership tells her the SIS-A still poses some challenges to families, but it is far more accurate than the previous version. 

 

 

 

Top Aide To RI Gov. Raimondo To Lead EOHHS; Policy Director For Providence Mayor To Run HHS

By Gina Macris

RI Governor Gina Raimondo has named Eric Beane, the top aide tasked with fixing the UHIP computer disaster, as Executive Secretary of Health and Human Services. 

Courtney Hawkins, chief policy officer for Providence Mayor Jorge Elorza, will become the new Director of the Department of Human Services (DHS). And Zach Sherman, Director of HealthSource RI, will take over the day-to-day management of the UHIP turnaround, according to a statement from Raimondo’s office issued May 12.

“Rhode islanders deserve and demand high-quality public services. I am confident the new leadership for our Health Cabinet will ensure better access to care and better outcomes for Rhode Islanders,” Raimondo said.

There has been a nearly complete turnover in the human services leadership since the start of the year, primarily because of problems with the UHIP computer system and with the management of the Department of Children, Youth and Families.

Beane has been with Raimondo since she took office in 2015, serving first as deputy chief of staff and then as chief operations officer, before the governor put him in charge of running DHS and turning around the $364-million Unified Health Infrastructure Project (UHIP) in January.

Hawkins, a Rhode Island native, “brings more than 15 years of experience working with social service agencies and in public policy” here and elsewhere, Raimondo said.

Hawkins has a bachelor’s degree from the University of Rhode Island and a master’s degree in social work from Columbia University. Before returning to Rhode Island in 2015, she worked as senior vice president at the now-bankrupt FEGS Health and Human Services, one of the largest social service agencies in New York City. The agency closed its doors in 2015.

UHIP, the largest information technology project ever undertaken by the state, has delayed eligibility decisions and healthcare and social service benefits for tens of thousands of Rhode Islanders – including some with developmental disabilities - since it was launched in September, 2016.

The botched rollout also cost the jobs of former EOHHS Secretary Elizabeth Roberts, the state’s chief digital officer, Thom Guertin, and the former DHS director, Melba Depena Affigne. 

In announcing the new appointments, Raimondo’s office said that Anya Radar Wallack, Acting Secretary of EOHHS since February, will return to the Brown University School of Public Health in June.

Beane is to start his new duties June 1 and Hawkins will take office June 12. Both appointments require confirmation by the state Senate.

RI Legislation Aims For Greater Accuracy And Transparency In Budgeting BHDDH, DCYF Costs

By Gina Macris

Companion bills in the General Assembly would require cost estimates for services to adults with developmental disabilities and children in state custody to become part of Rhode Island’s semi-annual Caseload Estimating Conference, a key budgeting guide. 

The bills, sponsored by Sen. Louis DiPalma, D-Middletown; and Rep. Teresa A. Tanzi, D-Narragansett and South Kingstown; specify that the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) and the Department of Children, Youth, and Families. (DCYF) would submit all their service costs, funded through Medicaid, to the Caseload Estimating Conference. 

Both BHDDH and DCYF have been plagued by chronic deficits. At BHDDH, a 2014 federal consent decree enforcing the 1999 Olmstead decision of the U.S. Supreme Court is putting additional demands on the developmental disabilities budget.

The executive branch prepares BHDDH budgets on the basis of “target” figures set by the Office of Management and Budget. In the past, BHDDH officials have said that the targets are not enough to cover actual service costs. This year, Governor Gina Raimondo accepted BHDDH figures in submitting her budget proposal to the General Assembly.

In a statement, DiPalma said, “The legislation is about honest and transparent budgeting. We need an accurate accounting of how many individuals we are serving in these vital programs, so that our budget reflects the associated costs, or makes program adjustments, or both.” 

He said about 3,000 children and teenagers are in DCYF care and roughly 4,000 adults with developmental disabilities depend on services from BHDDH.

Tanzi said, “Accurate caseloads will ensure the General Assembly is able to fully understand and appreciate the budgetary requirements of the agency to meet their obligations to our state’s vulnerable children and families. This legislation is about caring for our most vulnerable citizens but doing so in the most responsible way for the taxpayers.”

Medicaid accounts for about 31 percent of the state’s budget, according to the House Fiscal Office. That is roughly $3 billion in expenses annually, with each state dollar matched by slightly more than one federal dollar. Of all Medicaid funds, BHDDH spends 12.3 percent of and DCYF accounts for 1.4 percent.

In addition to adding BHDDH and DCYF to the Caseload Estimating Conference, DiPalma’s and Tanzi’s bills spell out the managed care reporting requirements of EOHHS in greater detail.

Current law allows agencies other than DHS and EOHHS to participate in the Caseload Estimating Conference but does not require them to contribute data.  It is not clear why DCYF and BHDDH have not been included in the Caseload Estimating Conference in the past.

The Caseload Estimating Conference runs back-to-back with the Revenue Estimating Conference in November and May. There are three principals; the House and Senate fiscal advisors and the state budget officer, who reach agreement through consensus on the latest estimates for revenue and for expenses in the human services, including Medicaid and a general public assistance program of about $1.5 million.

The governor relies, in part, on the November conference report to prepare the budget that is submitted to the General Assembly in January. The House and Senate use the results of the May conference as a basis for finalizing budget negotiations. 

The bills: S 0266 and H 5841

 

Budget Testimony: Need For DD Raises Critical, Stable Services Demand Double Current Funding

tom Kane                         RI capitol tv Image

tom Kane                         RI capitol tv Image

By Gina Macris 

This article has been updated. 

As others had done before him, Tom Kane told members of the House Finance Committee that he “could not stress enough” the importance of the General Assembly approving an additional $6.1 million to lift the poverty-level pay of some 4,000 front-line employees of private agencies under contract with the state to care for adults with developmental disabilities.  

At the same time, Kane, CEO of AccessPoint RI, one of those private agencies, said in a hearing April 11 that the overall funding for developmental disabilities is only about 50 percent of what is needed for service providers to regain the financial stability they once had and help their clients receive the supports they need and deserve. 

All together Governor Gina Raimondo seeks General Assembly approval for raising the currently enacted developmental disability budget of $246.2 million by $10.5 million over the next 14 months, with $4.4 million of the increase applied before June 30. Another $6.1 million would be added for the fiscal year beginning July 1, for a total of $256.7 in the fiscal year ending June 30, 2018.

Kane explained to members of the Finance Committee’s Human Services Subcommittee, led by Rep. Teresa A. Tanzi, D-South Kingstown and Narragansett), the different kinds of pitfalls he saw in Raimondo’s attempts to offset the cost of the raises by cutting expenses in other areas – or not covering some necessary spending at all.  

For example, Kane said, AccessPoint had a $107,000 increase in health insurance rates this year. ”There is no money” to cover that cost, he said. “We spend almost $1.2 million in health insurance for 158 people,” he said.  Kane said he could not expect his employees, many of whom make less than $11 an hour, to contribute more to health insurance, so other adjustments were made. He did not elaborate. 

“But at some point there’s going to be a collision between all these additional costs” and direct care workers, Kane said. In written remarks, he said the “cost of other insurances, building maintenance, rent, vehicles, fuel and office supplies continue to increase, adding to the financial strain on organizations. These costs should not be seen as extraneous. They directly relate to our ability to focus our full attention on good quality service provision,” Kane said.

He also zeroed in on some line-item savings that Raimondo has budgeted to offset the cost of the second consecutive raise for direct care workers, particularly the plan to reduce group home costs by $2.1 million in state funds. That ongoing effort, driven by economic and policy considerations, aims to move group home residents to less costly shared living arrangements in private homes - a process that requires clients to actively agree to the change. 

During the transition, there must be a consideration for maintaining the living arrangements of the individuals left behind in the group homes, Kane said, recalling a case in which two of four people in one AccessPoint home opted for shared living. Because the agency could not afford to keep the house operating with only two residents, it sought supplemental funds from the Division of Developmental Disabilities for a few months to cover outstanding expenses while it figured out its long-range plan, Kane said. The home finally closed, he said.

The example illustrates how, during a transition, “you are balancing two systems at the same time, “ Kane said.

“If you don’t pay attention to the current system with the same amount of zeal as the new system, people will get lost,” he said.

In fact, the state so far has been unable to realize much savings from the emphasis on shared living, only $100,000 of a target of $2.6 million in state funds in the current fiscal year, according to officials of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

Since last July, a total of 48 group home residents have committed to shared living. That figure is 18 shy of a target of 66 individuals for the fiscal year ending June 30.

Kerri Zanchi, Director of the Division of Developmental Disabilities, said that of the 48, 28 have moved since December, when the division began addressing issues that were barriers to shared living arrangements, like a need for physical modifications to some houses to make them more easily accessible, as well as extra medical and behavioral supports needed in the host homes. She said the division is also considering a range of other alternatives to group home living.

Ultimately, Kane said, a budget is a “representation of the values of our state.”  The care for people with disabilities and the salaries paid to caregivers either will reflect the dignity and respect afforded valuable members of society, or they won’t, Kane said.

 “I understand you have a lot of very difficult decisions to make,” he told the legislators, “and the numbers (revenues) aren’t looking great this year, which are going to make all those decisions even tougher.”

But Kane asked them to look at historical spending for developmental disability services, which he said are now only $9 million more than they were in 2010. In the meantime the demands of a 2014 federal consent decree with the U.S. Department of Justice, as well as new Medicaid rules for Home and Community Based Services (HCBS), make the job of supporting individuals with disabilities much more complex and expensive, he said. 

Traditionally, he said, support has been provided in “congregate” settings, or facilities “where you have groups of ten people with one staff person. “

“Under the consent decree they have to be either at a job or in the community,” he said. Those settings demand ratios of one staffer for each client, or no more than three clients, depending on the circumstances, Kane said.  In addition, the consent decree requires job coaches to be trained to a specific certification. and trained workers will demand higher pay, Kane said.t

The latest statistics indicate the current average pay for direct care workers is $11.14 an hour, before taxes, a figure that reflects a raise of about 32 cents effective last July 1, according to Donna Martin, executive director of the Community Provider Network of Rhode Island (CPNRI), a trade association which represents 25 of some three dozen private providers of developmental disability services.

The hourly reimbursement rate the state pays the employers for direct care workers is $11.91, which includes both wages and most – but not all – of employers’ actual costs for overhead and fringe benefits. That figure is still lower than the hourly reimbursement rate of $12.03 the General Assembly authorized in July, 2011  at the same time it cut a total of $24 million for private provider services, according to a chart prepared by James Parisi of the Rhode Island Federation of Teachers and Health Professionals.

In October, 2011, three months after the General Assembly acted, BHDDH reduced the actual reimbursement rate to $10.66 an hour, according to Parisi’s calculations.  Since then, the rate has been climbing incrementally to its current level of $11.91.

Parisi represents workers at the Trudeau Center in Warwick, where the starting salary is now $10.71 an hour.

Tori Flis, a service coordinator at one agency, which she did not name, said that even though there has been a slight increase in wages in the last year, the turnover is “just as high.”

Martin, of CPNRI, put the average turnover at one out of three workers a year, or 33 percent, although it varies from one agency to another.  Employers are unable to fill one out of six vacancies, and it costs an agency an average of $4900 every time it must search for a replacement and train a new hire, Martin said.  

Markella Carnavalle, who works at Trudeau, described the impact that turnover can have on individuals with developmental disabilities.

One client, who had grown attached to a worker who had to leave, was “crying for weeks,” she said.

That person had behavioral issues and didn’t want to work or eat, Carnavalle said. The client believed the worker left because “they didn’t want to be with me,” Carnavalle said, but “you can’t say the person needed more money. They don’t look at it that way.”

“You become a part of their lives and they become a part of yours” over time, Carnavalle said.

Flis, meanwhile, said the workers she supervises all have two and three jobs to make ends meet. Some work as many as three consecutive 12-hour shifts at different agencies – a total of 48 hours straight.

Those kinds of conditions lead to burnout, abuse and neglect, Flis said. The only reason she can afford to work one job at Trudeau is that she is married to a teacher who has a good salary and fringe benefits, including a pension, Flis said.

In another part of the current budget,  BHDDH officials and the legislators disagreed on whether there is funding for a developmental disabilities ombudsman, a position approved by the General Assembly last year after a woman died in a state-run group home. The state-run residential system is separate from the private system. 

The legislators and a member of the House fiscal advisory staff, Linda Haley,  said a total of $170,000 had been included in the BHDDH budget for the position.

Representing BHDDH, Christopher Feisthamel, the chief financial officer, and Zanchi, the developmental disabilities director, both said they understood it was an “unfunded mandate.”  Haley and BHDDH officials spoke informally after the hearing but reached no agreement on the status of the position.

(This article has been updated to correct the total cost of health insurance for AccessPoint RI, which is $1.2 million, not $12 million, according to CEO Tom Kane.)

 

Low Wages Create Labor Shortage in RI DD Services; Advocates Testify for Higher Pay

By Gina Macris

Low wages for workers who provide direct care for adults with disabilities in Rhode Island have led to such a crisis that some agencies lose 80 percent of their front-line staff within six months, although the average annual turnover rate is 33 percent.

To fill the gap, their employers spend millions of dollars in overtime and in training new hires, only to lose them again.

Advocates for the developmental disability service system spelled out the consequences of poverty-level wages for direct care workers during a hearing before the Senate Finance Committee March 21.

A Rhode Island College expert submitted written testimony which said that an underpaid workforce results in instability, anxiety, and a diminished quality of life in the people it serves. 

The new developmental disabilities director, Kerri Zanchi, also linked the stability of the workforce to the quality of services and outcomes for the people it serves. 

Governor Gina Raimondo has proposed adding $6.1 million for raises to direct care workers in the budget beginning July 1. If it passes, it would provide the second annual raise –albeit a modest one – for some 4,000 part-time and full-time caregivers.

The first raise was enacted under pressure from federal enforcement of a 2014 consent decree. The $5-million line item added about 36 cents an hour for front-line caregivers, giving them an average of $11.18 an hour retroactive to July 1, 2016, according to Sen. Louis DiPalma, D-Middletown, the first vice-chairman of the Senate Finance Committee.

DiPalma is leading a drive to increase the average wage for direct care workers and home health care workers to $15 an hour by July 1, 2021. Testimony during the hearing indicated that Massachusetts is on track to reach that goal in 2018.

DiPalma also noted that Rhode Island’s minimum wage rose 30 percent between 2012 and 2016, from $7.40 an hour to the current $9.60 an hour, while the average pay for direct care workers increased 1.6 percent during the same period.

Governor Raimondo is seeking a 90-cent increase in the minimum wage, or $10.50 an hour, for the fiscal year that begins July 1.  

The interstate disparity in wages, compounded by the fact that many Rhode Island residents can just as easily work in Massachusetts as in their home state, puts the developmental disability system at a distinct disadvantage in competing for employees.

Rhode Island’s system is “economically inefficient,” said Jim Parisi, spokesman for the Rhode Island Federation of Teachers and Health Professionals, who represents workers at Trudeau Memorial Center, one of about three dozen private developmental disability service providers in the state.

Donna Martin, director of the Community Provider Network of Rhode Island (CPNRI), said that an average of about 16 percent of jobs go unfilled, forcing employers to use overtime to fill vacant shifts, particularly in situations where safety requires a certain minimum level of staffing.

In some agencies the job vacancy rate is as high as 25 percent, according to Rebecca Boss, the acting director of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals.

Martin, meanwhile, said reports from 18 of the 25 CPNRI member organizations indicate they spend a $2 million a year on overtime, suggesting that the total statewide could be higher. Turnover, which includes training new hires, costs an average of about $4900 per person, she said.

A raise this year is expected to be slightly bigger than the average of about 36 cents an hour enacted in the current year. The exact amount is difficult to calculate in advance because the rate the state pays providers reflects wages and some, but not all, overhead costs, Martin said. And overhead costs vary from one provider to another.

The workforce crisis is the biggest single issue her membership faces, Martin noted.  Data she submitted to the committee indicated that the demand for staffers who provide direct support of adults with developmental disabilities is expected to grow 38 percent by 2022.

In written testimony, A. Anthony Antosh, director of the Sherlock Center on Disabilities at Rhode Island College, linked the labor shortage to a diminished quality of service for individuals with disabilities – an issue which is at the center of ongoing enforcement efforts of the 2014 federal consent decree.

With some agencies losing more than 80 percent of new hires within six months, Antosh said, workers cite low pay and the complexity of the work as the chief reasons they leave. They must work two or three jobs simply to make ends meet, he said.

A growing body of research documents that a stable, high quality direct support staff produces positive results in the population it supports. Those benefits include “increased personal competence, increased employment, increased social networks and social capital and increased satisfaction with life,” Antosh wrote.

“A direct support workforce destabilized by low wages, limited opportunities for professional development and a lack of a career ladder results in instability and anxiety in the lives of the people they support,” Antosh said.

Those who depend on services have “decreased opportunities for community connection, decreased employment, and a general decrease in quality of service,” Antosh said.

Quality service, with access to community-based employment and non-work activities, are a key goal of the 2014 consent decree and a subsequent court order, which aim to enforce the 1999 Olmstead decision of the U.S. Supreme Court.

That ruling re-affirmed Title II of the Americans With Disabilities Act, which says that individuals with disabilities are entitled to receive services in the least restrictive environment that is therapeutically appropriate.The decision presumes that the community is the least restrictive environment. 

RI DSP Graphic 1 3-22-17

At right are submitted to the the Senate Finance Committee March 22 by the Community Provider Network of Rhode Island, a trade association of 25 private agencies that provide services to adults with developmental disabilities. In the graphic, DSP stands for "Direct Support Professional," the title given to front-line workers. The average hourly wage does not include raises enacted  that took effect July 1, 2016.  

Madden to Leave RI Consent Decree Post; Lawyer Dianne Curran Named New Coordinator

By Gina Macris

Mary Madden, the coordinator of Rhode Island’s efforts to comply with a federal consent decree mandating a transformation of developmental disability services, will step down from that post at the end of March.

Mary Madden                          File Photo

Mary Madden                          File Photo

In her place will be Dianne Curran, a longtime disability rights lawyer who has worked both in Rhode Island and Massachusetts, most recently as a consultant to the Massachusetts Department of Elementary and Secondary Education.

The announcement was part of a public community forum at the North Providence Senior Center Feb. 23 that also catalogued a series of system-wide changes undertaken in recent months, even though developmental disability services still fall short of the funding parents said is necessary to individualize supports for their sons and daughters.

And the audience was reminded that family stories are the ones that make the biggest impact with members of the General Assembly, who in the next several months will consider increases in the current budget and one for the fiscal year which begins July 1.

Curran, al awyer for both Rhode Island Legal Services and the RI Protection and Advocacy System (now the Disability Law Center) during the 1980s, also has served Massachusetts state government in various legal positions in education, human services and developmental disabilities departments. Her lengthy experience in that state includes a brief stint coordinating activities in response to consent decrees affecting adults with developmental disabilities and mental illness.

Madden, a veteran developmental disabilities professional in the private sector, became consent decree coordinator for Rhode Island in January, 2016, at a time when the state was just beginning to craft a response to the 2014 federal consent decree.

 On Thursday, Madden said that continuing as consent decree coordinator “was not in the long-term plan.”  Madden said she would not have returned to graduate studies in disabilitiesand public policy at Rhode Island College if she were not satisfied that that the state had gained momentum in responding to the consent decree. 

Most recently, Rhode Island recruited Kerri Zanchi as director of developmental disabilities after a six-month vacancy in that post.

Zanchi is a career administrator in developmental disability services, who, like Curran, has extensive experience in Massachusetts. She told the audience at Thursday’s forum that she was drawn to the Rhode Island job because of the state’s commitment to community-based services and the opportunity to make lasting change as the state shifts away from isolated day programs and sheltered workshops to comply with the consent decree. The decree requires the state to comply with the 1999 Olmstead decision of the U.S. Supreme Court, which ruled that services for all persons with disabilities must be desegregated in accordance with the Americans With Disabilities Act.

Thursday’s session, attended by about 30 people, was notable for its low-key, conversational tone, a sharp departure from the angry complaints that dominated such meetings during 2016.

In the last six months, developmental disability officials reported, they have made several improvements, including the following:

  • speeded up the application process for adult services for individuals with developmental disabilities and adopted a policy to determine eligibility for adult services by the time special education students turn 17

• named a full time transition coordinator,  Carolee Leach, to work with high schools and the families of their special education students in preparing for adult life

• implemented a modest raise of about 36 cents an hour for direct care workers, as directed by the General Assembly

• introduced revisions to an assessment process used in determining individual funding allocations

• rolled out a supported employment incentive program for private service providers whohave placed 20 adults with developmental disabilities in jobs in the community since January

An independent court monitor in the consent decree case, however, has said in a recent report that the state must do much more to comply with the consent decree. (Click here for article on monitor’s latest report.)

At the meeting,  Zanchi, Madden and several other officials, including Jennifer Wood, General Counsel to the Office of Health and Human Services, heard from parents who said their adult children are lacking individualized community-based services.

Pat Abbate

Pat Abbate

Pat Abbate, who has a 46 year-old son with significant challenges, said the agency which serves him has good intentions but does not have enough financial resources to individualize services in the community

Tammy Russo, who has a 21 year-old son with disabilities, said he gets “no community services except for me.”

Greg Mroczek said 70 percent of his daughter’s program is in a day center isolated from the community.

Earlier in February, the same developmental disability officials heard a similar theme – a lack of adequate funding - from a mother who said she was forced into managing her daughter’s services because no agency would take her. Mary Genco said she asked 19 agencies, and each one said it had no nurse who wanted to deal with her daughter’s medical needs.

Genco, who is home with her daughter nearly all the time, said she represents growing minority of aging parents who are being “worn out” by adult children with extensive medical or behavioral support needs.

On Thursday, Pat Abbate put numbers on the funding gap. She said – and a check of the state’s Office of Management and Budget (OMB) website confirms – that funding for developmental disabilities lags behind the high of $260 million enacted by the General Assembly for the fiscal year between July 1, 2007 and June 30, 2008. At this time last year, the enacted budget was just shy of $231 million, according to OMB documents.

In response to a federal court order which said the state did not allocate enough money to implement the consent decree, Governor Gina Raimondo later pushed for increases, approved by the General Assembly, which boosted the bottom line to $246.2 million in the current fiscal year.

In her most recent budget proposal in January, Raimondo seeks an additional $4.4 million to finish the current fiscal year, for a total of $250.6 million. For the next fiscal year, beginning July 1, Raimondo has asked the General Assembly for $256.7 million.

Heather Mincey, a developmental disabilities administrator, said, “With our budget we try to advocate for as much money as we can.”

Brian Gosselin, chief strategic officer at OHHS, explained that the various departments of state government are active in their own advocacy, working with OMB and the Governor’s office, from July through December. But the state agencies don’t control the allocations, he said.

With the governor’s budget proposal now in the hands of the General Assembly, Gosselin and Mincey agreed, it’s vital that the community speak up.

“It’s important for families and advocates to be out there to speak to their representatives and let them know what your needs are,” Mincey said. 

A member of the audience, who said he works for a developmental disability service agency in Massachusetts, drove home Mincey's and Gosselin’s message.

The voice of families and advocates for developmental disability services is much stronger in Massachusetts than it is in Rhode Island, he said.

“When a family member calls up and gives them (legislators) a story, it makes such an impact,” he said. “I don’t think enough people get that point” in Rhode Island.

 

 

Roberts Resigns as RI Health and Human Services Secretary; Wood's Future Role Unclear

By Gina Macris 

Rhode Island’s Secretary of Health and Human Services, Elizabeth Roberts, resigned late Tuesday, Feb. 14, over the quagmire created by UHIP, the state’s computerized human services benefits system.

Governor Gina Raimondo, in a press conference outside her office, said she met with Roberts “and she presented me with her resignation, which I accepted.”

“It was her choice, and I commend her for it. I think she realized, as I realized, that the challenges we’re having with UHIP require a new set of eyes, and a fresh set of eyes. “

Roberts’ top aide for many years, Jennifer Wood, who is Deputy Secretary of Health and Human Services, has been involved closely with the roll-out of the UHIP computer system and also has directed the state’s compliance effort with a 2014 federal consent decree affecting adults with developmental disabilities.

Asked whether Wood’s position is at all affected by the problems of the UHIP rollout, Raimondo’s spokesman, David Ortiz, said in an email that the Governor would give a “full update” on Wednesday.

The resignation came on the eve of a briefing Raimondo has scheduled for the media on Wednesday, Feb. 15, to discuss an analysis of UHIP conducted during the last month by her chief operating officer, Eric Beane, and steps that will be taken going forward.

“Secretary Roberts has been in public service for decades and has done so many good things for the people of Rhode Island,” Raimondo said.

In a statement, Raimondo said Roberts has “fought her entire career to expand access to affordable healthcare for more people. As my Secretary of Health and Human Services, Elizabeth played a key role in our successful efforts to drive Rhode Island’s uninsured rate to one of the lowest in the nation while reducing costs.”

Roberts was criticized by Nicholas A. Oliver of the Rhode Island Partnership for Home Care.

In a statement, he said that “Roberts’ rigid view of the state healthcare system blinded her from understanding the realities of operating healthcare practices and agencies in Rhode Island.”

“Because Roberts was a visionary stemming from her healthcare public policy interest as a state senator and a lieutenant governor without practical operational experience as a healthcare provider, her naivete and inexperience led to her ineffectiveness in the role of Secretary,” Oliver said.

Roberts’ is the third resignation connected to the $364 million computer fiasco. Melba Depena Affigne, director of the Department of Human Services, and her chief digital officer, Thom Guertin, resigned in January under pressure from Raimondo.