McKee: RI DD Services Need $510.6 Million

By Gina Macris

RI Governor’s FY 25 Budget Proposal-

In a budget plan largely driven by the federal court, Rhode Island Governor Dan McKee has proposed $510.6 million in overall developmental disabilities spending for the fiscal year beginning July 1, about $41.5 million more than the General Assembly enacted for the current fiscal year.

Roughly 55 percent, about $283.4 million, of the proposed developmental disabilities budget would be reimbursed by the the federal-state Medicaid program.

At the same time, McKee seeks to close a projected deficit of $28.3 million in the current budget of $469.1 million as the state tries to integrate adults with developmental disabilities into their communities to comply with a 2014 consent decree with the Department of Justice (DOJ).

Much of the shortfall reflects upward cost adjustments made by the Caseload Estimating Conference (CEC), a budget-planning panel which meets twice a year, advising the governor in November and the General Assembly in May.

McKee also would add $2.9 million to the current budget, and $1.1 million in the next one, for “conflict-free case management,” not only to adhere to Medicaid regulations but to comply with the consent decree. Almost all that funding would come from the federal government.

State social workers from the Division of Disabilities will be assigned to check in monthly with those receiving services and their families to determine if their needs are being met, according to a BHDDH spokesman.

It is not clear whether – or how - this arrangement meets the expectations of an independent court monitor overseeing the consent decree changes. The monitor, A. Anthony Antosh, hasn’t issued a report since last August. Antosh has called for “independent facilitators” to help each individual develop a purposeful program of services and to keep track of how the plan works out.

Developmental disabilities programs account for more than $7 out of every $10 spent at the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), which would get a total of $706.3 million in McKee’s proposal. McKee’s proposed budget for all state spending in the new fiscal year is nearly $13.7 billion.

The latest proposal represents nearly a third more funding for developmental disabilities than the $339.3 million the General Assembly approved just three years ago, in the spring of 2021.

Much of the investment, in recent years, has been used to hike wages for caregivers and their supervisors, for education and training, and for the development of innovative approaches to supporting adults with developmental disabilities.

In three steps since July, 2021, the state has raised the pay for direct care workers by about 49 percent, from $13.18 an hour to a minimum of $20 an hour, in keeping with orders from Chief Judge John J. McConnell of the U.S. District Court, who has been monitoring the state’s efforts to meet the requirements of the consent decree since 2016.

McConnell found that, apart from the impact of the Covid-19 pandemic, historically depressed wages had led to an exodus of workers that prevented the state from offering employment and other services in the community as promised in a 2014 consent decree.

Beginning last July, the $20 minimum hourly rate for workers has been wrapped into a new reimbursement system for private agencies intended to accurately evaluate the needs of individuals, allow them bigger spending limits to get employment and other supports, and to implement administrative changes promoting integration in the community.

The ultimate impact of higher funding on the lives of adults with developmental disabilities remains to be seen. A decade after the state adopted an “Employment First” policy as part of the consent decree, the governor’s figures say that 24.8 percent of the population protected by the consent decree is working in the community, far short of the target 73 percent.

In November, BHDDH told the CEC that private service providers still don’t have the number of workers they need to offer employment-related services and community-based supports for all who want them. A BHDDH report called the shortage “critical.”

 Still, the state’s eye-opening investment in historically underfunded services during the last few years has begun to show results. While a big staff shortage remains, private agencies are beginning to see improvement in their ability to attract new workers.

The recent pay hikes, along with support from a statewide workforce initiative, helped private providers add 274 direct support staff between January and September of 2023, BHDDH officials reported in November.

McKee’s proposal for Fiscal Year 2025, which begins this July, includes nearly $462.4 million in reimbursements to the three dozen private agencies, or subcontractors, who serve as the backbone of the service system the state relies on to carry out the requirements of the 2014 consent decree.

These reimbursements also cover the cost of one-person programs managed by so-called “self-directed” individuals or families. The number of self-directed programs has grown to more than a quarter of the caseload of about 4,000 persons, in part because of the staff shortage at private agencies. Individuals and families, however, report the same kinds of problems finding qualified caregivers as the agencies, especially when it comes to securing employment-related services.

A separate line in the budget would allocate $15.6 million for other costs related to private services, according to a spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

These expenses include the salaries of state social workers and administrators assigned to clients of the private providers, as well as human resources support, building maintenance, information technology support, and contracts for electronic records and for education and training provided by the Sherlock Center at Rhode Island College, the spokesman said.

The state also maintains its own network of group homes, which McKee would fund with $32.6 million in the next fiscal year.

All together, these budget categories add up to nearly $510.6 million.

No additional wage increases are planned for the fiscal year beginning July 1, except for those who provide in-home services to adults with developmental disabilities and were included in a comprehensive Medicaid rate review conducted by the Office of the Health Insurance Commissioner (OHIC). For the in-home workers, the governor’s budget seeks about $844,000. The final OHIC report, issued last September, said that the developmental disabilities workforce will be part of the next rate review in two years.

BHDDH Invites Public Comment On Rate Review

By Gina Macris

Beginning Sept. 28, the public will have a chance to comment on preliminary recommendations of a consultant’s long-awaited review of rates paid Rhode Island’s private providers of developmental disability services.

The court-ordered rate review is expected to address several barriers to the state’s compliance with a 2014 civil rights consent decree. The agreement requires the state to provide individualized services enabling adults with developmental disabilities to integrate with their communities in accordance with the Americans With Disabilities Act.

That goal means that, among other changes, the the state must offer more competitive rates to private service providers to enable them to greatly expand their direct care workforce.

The Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) has announced that its consultant will present its initial recommendations in two online meetings Sept. 28 and 29. The public will have until Oct. 21 to submit comments.

The two online presentations will be facilitated by officials of the Burns & Associates Division of Health Management Associates, (HMA-Burns) the healthcare consultant BHDDH hired to conduct the review. The public may attend both sessions, but each one will have a different focus, with the first including technical details of interest to service providers and the second aimed at consumers, their families, and other interested persons.

A BHDDH spokesman said there will be no pre-registration or meeting passcodes for either of the two events, to be hosted on the Zoom platform.

The schedule:

After Sept. 29, the public will be able to view recordings of the meetings, access rate review materials, and find instructions for submitting comments on the BHDDH website at https://bhddh.ri.gov/developmental-disabilities/initiatives/rateand-payment-methodology-review-project.

The recommendations of the rate review will be finalized after the conclusion of the public comment period.

The rate review was timed to enable the state to use it in formulating the annual budget for the fiscal year beginning July 1, 2023.



RI Proposes DD Action Plan To Avoid Contempt Of Court

By Gina Macris

The state of Rhode Island would raise the pay of caregivers for adults with developmental disabilities to $20 by mid-2023 as part of an “action plan” submitted Tuesday, Oct. 19, to fend off a contempt hearing in federal court over continued violations of a 2014 consent decree mandating the integration of this population in their communities.

The contempt hearing, which had been scheduled to begin Oct. 18 and run through Oct. 22, was canceled last week without explanation by Chief Judge John J. McConnell, Jr., of the U.S. District Court. There previously had been indications the state was working on a settlement proposal.

The action plan also promised that workers would get an interim raise, from $15.75 an hour to $18 an hour, to take effect July 1, 2022, as well as the development of an “intensive” and coordinated statewide initiative involving the Department of Labor and Training, the Community College of Rhode Island, and other organizations to recruit and retain skilled candidates to fill gaps in the workforce necessary to support adults with developmental disabilities who want to be integrated into their communities.

In addition, a total of $12 million would be set aside for a “transformation fund” aimed at supporting private service providers as they go through the first two parts of a three-part transition period from a system originally framed around segregated group care to one that promotes individualized services in the community. Of the $12 million total, $2 million would be reserved to help families who self-direct their own programs, essentially acting as independent employers and program directors for staff serving individual loved ones.

The remaining $10 million would be divided into grants to enable provider agencies to begin shifting to integrated services during the next 12 months, with provisions for considering more funding to expand program innovations during a third phase.

In addition, the action plan commits the state to setting aside $2 million to help adults with intellectual and developmental challenges acquire technology. While smartphones and tablets have become ubiquitous, many adults with developmental disabilities do not have access to the internet.

Overall, the plan appears to conform to several orders issued by McConnell since the summer of 2020 to bring the state into compliance with the consent decree.

A permanent budgetary, operational, and bureaucratic framework for a new developmental disabilities system would emerge from a rate review study that is expected to begin in coming weeks. The Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, (BHDDH) plans to award the contract by Nov. 1. BHDDH originally required the work to be done in six months, but the action plan said the deadline will be December 1, 2022, a little more than a year from now.

The governor’s budget proposal for the fiscal year beginning July 1, 2022 (Fiscal Year 23) “will recognize” preliminary recommendations of the rate review consultants, and “the State will work in good faith to incorporate the reasonable recommendations set forth in the final rate review project” in the governor’s following budget proposal for the fiscal year beginning July 1, 2023 (Fiscal Year 24), the action plan says.

Because the state needs to expand the workforce and hike wages to deliver on the individualized, community-based supports required by the consent decree, reforms are expected to require a significant financial commitment by the General Assembly.

The upcoming rate review would add dollars and cents to the picture and include recommendations for reimbursement models that would stabilize the finances of provider agencies. Providers say the current fee-for-service model does not pay their actual costs, including free care often given to individuals while the agencies appeal service cuts.

The monetary changes and any new provider reimbursement model would have to be approved by the General Assembly. To move forward, the action plan also needs approval from the U.S. Department of Justice and the court..

To read the state’s action plan, click here.

DOJ, RI Spar Over Contempt In Olmstead Case

Federal Courthouse in Providence

Federal Courthouse in Providence

By Gina Macris

The state of Rhode Island told a judge it cannot be held in contempt of a 2014 civil rights consent decree seeking to integrate adults with developmental disabilities in their communities because of circumstances beyond the state’s control.

But the U.S. Department of Justice (DOJ) says that the state has only itself to blame for its failure to comply.

The state’s “persistent choices to under-fund the system have created a dramatic provider shortage” that has left the target population isolated, the DOJ said in a counter-argument submitted Friday, Sept. 10, to the U.S. District Court.

The “refusal to adequately fund the Consent Decree is precisely the kind of self-imposed inability to comply” that undermines the state’s arguments in its defense, the DOJ said.

The decree stems from a 2014 finding by the DOJ that the state violated the Americans With Disabilities Act by relying too much on sheltered workshops paying sub-minimum wages and isolated day care centers, which kept people with disabilities out of mainstream society. The Olmstead decision of the U.S. Supreme Court has re-affirmed the rights of people with disabilities to receive support in their communities to give them a chance to live regular lives.

The DOJ further cites warnings of an independent court monitor a year ago that the state will be unable to comply with the consent decree by 2024 unless it came up with a multi-year plan to overhaul its developmental disabilities system, which for a decade has encouraged segregated care over integrated services. Such a plan has not been forthcoming.

The state’s lawyers, Marc DeSisto and Kathleen Hilton, submitted arguments Sept. 1 in response to a DOJ motion two weeks earlier that asked the Chief Judge of the U.S. District Court to find the state in contempt of the consent decree and impose fines ranging up to $1.5 million per month. Chief Judge John J. McConnell, Jr. has scheduled a hearing the week of Oct. 18 through Oct. 22.

The state’s lawyers maintained the state could not meet benchmarks for integrated employment and other criteria because of the COVID-19 pandemic, as well as resistance by adults with developmental disabilities themselves to work and non-work activities in the community.

But in its reply Sept. 10, the DOJ said the state’s characterization of the population “paints an inaccurate and offensive picture of people with developmental disabilities” and “reflects a profound misunderstanding of the nature, purpose, and obligations of the Consent Decree.”

DeSisto and Hilton, meanwhile, also argued that numerical targets for employment of adults with disabilities were not required by the consent decree, even though, as the DOJ said, documents show that state officials have admitted the opposite in numerous statements to the court since 2014, in writing or in person..

The state’s lawyers also maintained the state cannot be held in contempt until after the agreement expires on June 30, 2024 – an interpretation the DOJ said is unheard of in litigation involving system-wide reform.

In picking apart the state’s position over 28 pages, the DOJ said the state is urging the court “to adopt an interpretation of the consent decree that is “at odds with the decree’s text and purpose,” the DOJ said.

The state maintained the consent decree “imposed what could only be described as a cultural shock on the targeted community. After years of receiving services in “non-community” settings, “they are being told that their lifestyle must change,” the state’s lawyers said.

The DOJ disagreed. Rather than being told what they must do, the DOJ said, those eligible for services and their families have the right to make informed choices after receiving education and support about what working and enjoying leisure activities in the community might mean for them.

The state’s own data show that it “dramatically overstates” the resistance to integrated services, with 80 of 1,877 persons, or 4 percent, opting out of integrated services through a formal variance process, the DOJ said. And it cited a report from a court monitor in 2016 who had said he found “strong broad-based acceptance of the goals and desired outcomes of the consent decree.”

Similarly, the DOJ lawyers rejected the state’s argument that the COVID-19 pandemic prevented compliance with the annual employment targets in the consent decree. The pace of new job placements had slowed significantly more than a year before the onset of COVID-19, the DOJ said.

While the pandemic did make compliance more challenging, the state made “minimal efforts” to serve the consent decree population during the pandemic, the DOJ’s civil rights division argued.

“Given the availability of enhanced federal matching funds for providing integrated Medicaid services like those the Consent Decree requires, the State has the opportunity to increase funding for integrated employment services, provide the full amount of integrated day services to each target population member, and enhance wages to attract the required number of service providers,” the DOJ said. Its memorandum is signed by Rebecca B. Bond, chief of the DOJ’s civil rights division, as well as trial attorneys expected to litigate the case in October.

The state did earmark $39.7 million in federal-state Medicaid money to raise the wages of workers and their supervisors by $2 to $3 an hour in the current budget, a roughly 15 percent increase, but only at the conclusion of court-ordered negotiations between state officials and providers.

DeSisto and Hilton, the state’s lawyers, also said the state is finalizing the language in a request for outside proposals “for evaluation and implementation of new rate and payment options for (the) Developmental Disabilities Services System.” The preparation for the request for proposals indicates that BHDDH plans to go out to bid through the state purchasing system, which can take several months.

The state last conducted a rate review in 2010 and 2011, but the General Assembly did not follow the recommendations of the consultant, Burns & Associates. Instead, it set dozens of reimbursement rates for private providers roughly 17 to 19 percent lower than Burns & Associates recommended, with the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) saying that it still expected providers to maintain the same level of service.

In November 2018, a principal in Burns & Associates, Mark Podrazik, testified before a special legislative commission that that a rate review was already overdue. Rates should be reviewed every five years, he said.

A few months later, BHDDH hired NESCSO, the nonprofit New England States Consortium Systems Organization, to analyze Rhode Island’s developmental disabilities system from top to bottom.

Although the NESCSO contract called for a rate review and analysis of alternatives to the state’s fee-for-service reimbursement system, NESCSO was asked to present options for change but to make no recommendations.

The BHDDH director at the time, Rebecca Boss, said the department wanted to expand its analytical capability and make its own choices going forward.

The 18-month contract, which cost $1.1 million, produced a final report and supplementary technical materials which, among many other things, said the provider system was significantly underfunded. Since the report was completed July 1, 2020, BHDDH has remained silent on its findings, and has not exercised options for renewal of NESCSOs services.

In their memorandum, the state’s lawyers said that “the intention of the rate review process is to strengthen the I/DD system and services provided to individuals, as well as to address provider capacity to deliver those same services. Thus, the State can and will at hearing clearly demonstrate that it has been ‘performing its obligations’ under the various sections of the Consent Decree.”

The DOJ has scoffed at that notion. The DOJ said in its original filing in August that it is prepared to show the “State failed even to ask its Legislature for a sufficient appropriation, and that the State failed to make efficient use even of the resources it had – for example, by failing to modify State rules and incentives that favor providers of less integrated services over providers of more integrated services.

"Huge Disaster Brewing In All Our Back Yards" - CEO of RI DD Group Home Agency

David REISS * Photo Courtesy the Fogarty Center

David REISS * Photo Courtesy the Fogarty Center

By Gina Macris

David Reiss, CEO of the John E. Fogarty Center, manages 18 Rhode Island group homes for adults with developmental disabilities, where all but 10 or 12 of the 80 residents have no place to go and no active family support in case of an outbreak of COVID-19 infections.

“We may be able to prevent people from getting sick if we have the proper equipment,” he said in a telephone interview April 3.

“But how can I ask someone to come to work when we don’t” have the necessary Personal Protective Equipment (PPE)? Reiss asked. “What do I do if I have no staff?”

While Reiss has devised a worst-case contingency plan in the event a resident in one of the group homes becomes ill, he and other providers are pressing the administration of Governor Gina Raimondo to categorize direct care workers as “essential health care workers” during the coronavirus crisis. That designation would allow them to receive protective equipment according to the same priority as nursing homes, and would help group home staff and residents get priority for testing and treatment, he said.

To be sure, Reiss said, hospitals and nursing homes are having trouble getting masks and protective gowns, but their predicaments are recognized publicly, while the pleas of the developmental disability community “seem to be getting no traction.”

“We’re the forgotten community,” he said.

Workers in group homes face the same risks as those in nursing homes, for less pay, he said. The average pay for direct care workers, the result of the reimbursement rates set by the state for private providers, is $13.18 an hour, according to a trade association analysis of wages for two dozen agencies. “There is a huge disaster brewing and it’s in all our back yards,” Reiss said.

There are 1180 adults with developmental disabilities in group homes, including 125 in state-run houses. At least one nurse who works for a service provider has said privately to colleagues that it’s probable the coronavirus will reach the group homes.

As it now stands, without adequate protective equipment and space to isolate the sick, Reiss said, he has no choice but to call 911 and send that person to the hospital. He has asked his staff for volunteers who would be willing to each take a single healthy resident into their own homes to clear two or three facilities as isolation wards for the ill, Reiss said. But that plan is more a hope than a reality at this point, he said.

The request that developmental disability workers be designated essential health care workers has been “kicked up to at least the Department of Health,” Reiss said.

The state’s Director of Developmental Disabilities, Kerri Zanchi, is pressing for the same designation, according to a weekly newsletter emailed to members of the developmental disabilities community March 28.

But it is not clear – to Reiss or others – who has the authority to make such a designation.

Pressed on the matter, a spokesman for the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals said in a statement: “The people who work in the community-based provider systems who are supported by BHDDH are a critical workforce as we fulfill our mission. Our understanding is that the Department of Health is looking at this issue” of essential health care worker designation.

The U.S. District Court, meanwhile, has issued an order that the state “will make best efforts” to ensure that those protected by a 2014 civil rights consent decree continue to receive “Essential Services and Supports,” that are necessary for their “health and safety.”

The order, issued April 1, requires the state to consider recommendations from various segments of the community, including representatives of families, service providers and advocates, for providing “Essential Services and Supports” during the crisis. “Essential Services and Supports” were not further defined.

The order from Chief Judge John J. McConnell, Jr. also requires the state to bring community representatives to the table in its pursuit of waivers, or exceptions, to federal Medicaid rules to allow a more nimble response to the current public health crisis.

McConnell said he wants a report from the state by April 8 on its progress in addressing changes to Medicaid rules with the federal government.

In addition, he said, he wants reports from the state every two weeks on:

· How “Essential Services and Supports” are being provided

· Funding for such supports

· Strategies for maintaining and supporting the direct support workforce

· Communication with those protected by the consent decree, their families and other stakeholders.

Financially, service providers have been hanging on by a thread, in many cases forced to lay off day program staff because of social distancing rules. The Fogarty Center, for example, has laid off 22 workers, Reiss said.

Reiss said he understands the state was processing the first of a series of emergency payments to providers during the week ending Friday, April 3.

These advance payments will “stop the hemorrhaging,” but will not make providers whole, said Tina Spears, executive director of the Community Provider Network of RI, the larger of two provider trade associations in Rhode Island.

Spears has pressed for a statewide rate increase of $4.55 an hour for those who are still at work because of the greater risks and demands on them. That increase would boost the pay of workers in privately-run group homes from an average of $13.18 an hour to $17.73, which is still about a dollar less than the starting wage of those who do the same work in the state-run group homes.

One of the waivers, or exceptions, the state is seeking from the Centers for Medicare and Medicaid Services would allow the state to incorporate rate increases in emergency payments to providers.

The total $15.4 million approved by the state so far represents federal-state Medicaid money already in the budget which is being issued in advance rather than paid after services are rendered. It is intended to protect private providers from bankruptcy during the crisis.

On another front, Disability Rights Rhode Island (DRRI), the legal protection and advocacy agency, said that it has sent a letter to Governor Gina Raimondo asking her to give clear emergency guidance to hospitals and providers to prevent “any discriminatory rationing of health or emergency measures during this time,” according to a statement from the organization.

The Americans With Disabilities Act, Section 504 of the Rehabilitation Act, and the Affordable Care Act all prohibit discrimination on the basis of disability.

In the letter to Raimondo, Morna Murray, executive director of DRRI, said that federal law requires several points to be made in any guidance from the Governor’s Office and the Rhode Island Department of Health to healthcare practitioners “in order to avoid discriminatory outcomes. Murray outlined the following points in the letter:

• Treatment allocation decisions must be made based on individualized determinations, using current objective medical evidence, and not based on generalized assumptions about a person’s disability.

• Treatment allocation decisions cannot be made based on misguided assumptions that people with disabilities experience a lower quality of life, or that their lives are not worth living.

• Treatment allocation decisions cannot be made based on the perception that a person with a disability has a lower prospect of survival. While the possibility of a person’s survival may receive some consideration in allocation decisions, that consideration must be based on the prospect of surviving the condition for which the treatment is designed – in this case, COVID-19 - and not other disabilities. Treatment allocation decisions cannot be made based on the perception that a person’s disability will require the use of greater treatment resources. Reasonable modificitons must be made where needed by a person with a disability to have equal opportunity to benefit from the treatment.

Murray also said that people who use ventilators on a daily basis should never be removed from ventilator support “for reasons of rationing.”

“It is vital that explicit guidance from RI DOH to medical providers clearly set forth that such actions are never acceptable.” She said.

The DRRI statement said its legal operations remain available to the public. The organization indicated its attorneys are particularly concerned about any medical rationing, discriminatory “Do Not Resuscitate” (DNR) orders in hospitals, or emergency placements of individuals with disabilities in congregate settings that are disrupted as a result of the coronavirus. For contact information and details about DRRI operations, click here.


Judge Asks Olmstead Monitor To Confer With RI DD Community About Impact Of Coronavirus

By Gina Macris

Chief Judge John J. McConnell, Jr. of the U.S. District Court in Rhode Island has asked the independent monitor for a 2014 consent decree to advise him on ways the Court can respond to the needs of adults with developmental disabilities and their families and lessen the burden on the developmental disability service system in light of the COVID-19 public health crisis.

Recently, McConnell ordered the monitor, A. Anthony Antosh, to work with state officials, service providers, and the community to come up with a plan by August for implementing the civil rights consent decree, which requires an emphasis on jobs and integrated non-work activities in the community in accordance with the Olmstead decision of the U.S. Supreme Court.

But the latest order, issued March 18, asks Antosh to speak with the same groups of people, in part to “lessen the administrative burden on providers and the State.”

In its entirety, the order says: “Recognizing the difficulties posed to the families, providers, and the State by the public health crisis from the COVID-19, the Court requests that the Court Monitor engage in conversations with the State, providers, family advocates, and the DOJ to make recommendations to the Court on orders that could (1) lessen the administrative burden on providers and the State; (2) assist class members and their families in maneuvering the system and ensuring essential services; (3) any other recommendations the Court Monitor deems appropriate.”

In other news:

A. Kathryn Power To Lead RI BHDDH

A. Kathryn Power

A. Kathryn Power

Rhode Island Governor Gina Raimondo and her Health and Human Services Secretary have tapped A. Kathryn Power, a veteran administrator of mental and behavioral health initiatives at both the state and federal level, to direct the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) – for the second time.

Power led the agency formerly known as the Department of Mental Health, Retardation and Hospitals during the administrations of former governors Bruce Sundlun and Lincoln Almond, from 1993 to 2003.

Known as a staunch consumer and family advocate wherever she has gone, Power left state government to become director of the federal Center for Mental Health Services, a part of the Substance Abuse and Mental Health Services Administration (SAMHSA).

In the last 15 years, she also has served as SAMHSA’s Region One director, providing authoritative advice and assistance on behavioral health policies and innovations to inform the financing and delivery of prevention, treatment, and recovery services.

Raimondo said she was “thrilled that (Power) has agreed to once again assume leadership of BHDDH and I look forward to continuing to work together as we improve outcomes for all Rhode Islanders who live with behavioral health challenges and developmental disabilities.”

“Rhode Island is fortunate to have someone of Kathryn’s stature – possessing such a high level of expertise in behavioral healthcare and developmental disabilities – stepping into this vital position,” said Womazetta Jones, Secretary of the Executive Office of Health and Human Services.

Power said in a statement, “I’m thankful to Governor Raimondo and Secretary Jones for the opportunity to contribute to our state’s evolving system of care for individuals facing behavioral health conditions and developmental disabilities.”

“Our state has made significant progress over the last few decades, but we have more work to do to ensure that all Rhode Islanders have access to the care and support they need on their paths toward recovery and community integration.”

As BHDDH director, Power will oversee a troubled hospital system, developmental disability services in the midst of a ten-year overhaul under federal oversight, and behavioral healthcare issues that include the state’s response to the opioid crisis that permeates communities nationwide.

Power succeeds Rebecca Boss, who is stepping down Dec. 31.

Except for her fifteen years in the federal government, Power has worked in the mental health field in Rhode Island for most of her life.

In addition to having served once as director of BHDDH, she is a former director of the Rhode Island Office of Substance Abuse, the Governor’s Drug Program, and the Rhode Island Anti-Drug Coalition. From l985 to l990, Power served as Executive Director of the Rhode Island Council of Community Mental Health Centers.

She has served as President of the National Association of State Mental Health Program Directors and has received many awards for her work in mental health, substance abuse and civic leadership, as well as recognition for her advocacy on behalf of people with disabilities.

Power received her bachelor’s degree in education from St. Joseph’s College in Maryland, and her master’s degree in education and counseling from Western Maryland College. She is a graduate of the Toll Fellowship program in leadership training of the Council of State.Governments and another program in senior executive leadership at Harvard University’s Kennedy School of Government. Power is also a retired Captain in the U.S. Navy Reserve.

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

Rick Jacobsen *** All Photos By Anne Peters

Rick Jacobsen *** All Photos By Anne Peters

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Elena Nicolella

Elena Nicolella

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

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

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

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

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

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

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

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

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

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

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

Louis DiPalma and Rebecca Boss

Louis DiPalma and Rebecca Boss

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

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

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

Jacobsen also presented other preliminary statistics:

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

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

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

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

By Gina Macris

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

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

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

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

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

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

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

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

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

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

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

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

Staffing Ratios Hinder Needed Flexibility

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

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

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

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

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

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

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

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

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

Study Commission To Hear from NESCSO

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

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

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

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

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

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

Paradox In Unspent Funds For Employment

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

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

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

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

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

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

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

Consumers Want More Control Over Money Assigned To Them

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

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

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

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

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

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

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

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

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

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

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

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

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

The headline claims this system “promotes segregated care.”

This assertion is false.

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

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

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

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

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

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

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

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

By Gina Macris

Elena Nicolella and Rick Jacobson All Photos By Anne Peters

Elena Nicolella and Rick Jacobson All Photos By Anne Peters

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

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

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

DiPalma and Kelly Donovan, A Consumer Advocate

DiPalma and Kelly Donovan, A Consumer Advocate

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

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

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

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

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

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

Boss at 4-25 meeting edited.jpg

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

R.I. Tightens Controls In Wake Of Embezzlement Of More Than $220K In DD Client Funds

By Gina Macris

See correction at end of article

A now-deceased Rhode Island state employee embezzled a total of $220,602 from a checking account held in escrow for residents of the state-run group home system, the state’s Office of Internal Audit has reported. 

The employee, Kevin B. Ward, died Nov. 26 at age 60, a few weeks after the State Controller flagged a suspicious transaction from the client checking account Ward controlled on behalf of residents of RICLAS, or Rhode Island Community Living and Supports, a part of the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).. 

Rhode Island State Police investigated a suspicious death of a BHDDH employee last November that was ruled a suicide, according to a statement a state police spokeswoman made to the Providence Journal Dec. 13. 

On April 8, the spokeswoman, Laura Meade Kirk, said State Police could make no additional comment apart from the fact that its investigation closed without criminal charges. 

State officials have described the situation involving Ward’s death as tragic

“While no RICLAS program recipients were directly affected, this is a tragic situation for many of our state employees who knew and worked with the late Kevin Ward,” said BHDDH director Rebecca Boss after the state Office of Internal Audit completed its report April 3. Ward had been a financial manager for RICLAS from February, 2005 until his death. 

The state has made good on the funds belonging to the RICLAS residents and has recouped more than $70,000 from its insurance company, according to a spokeswoman for the Office of Management and Budget (OMB). The state also is exploring legal avenues to recover the rest of the money. 

The suspicious activity was discovered Nov. 2 by the state’s Controller, who, along with the Treasurer’s Office, was in the midst of a broader effort to tighten internal controls over the custody of state-owned checking accounts, the director of the Office of Internal Audit, Dorothy Pascale, wrote in an April 3 memo to Boss.

The OMB spokeswoman, Brenna McCabe, elaborated: 

Since November, the state’s Office of “Accounts and Control has worked with our finance units across all agencies to implement and reinforce measures to help prevent this from happening again.” 

Among other oversight and control measures, she said, new rules require two persons to sign checks and prevent those who signed the checks from cashing them. 

Ward had been authorized both to sign and cash checks on behalf of the State of Rhode Island.

According to Pascale’s memo, Ward transferred money from the RICLAS’ residents’ account to another, long-dormant, state-owned RICLAS checking account at Bank of America, and from there, to his own Citizens Bank checking account. 

Ward had complete control over the Bank of America account that paid directly into his own Citizens Bank account. He even received the account statements from Bank of America.  

Pascale said investigators found records of 21 checks totaling $220,602 payable to Kevin B. Ward that were deposited in Ward’s Citizens Bank checking account from August, 2011 to November, 2018. The check that triggered the investigation had been made out to Ward for $4,500 on June 20, 2017 but was not spotted for more than 16 months. 

On August 1, 2011, the state-owned Bank of America account had a balance of $38,476, but the bank does not retain records longer than seven years, so investigators were not able to gather evidence of account activity prior to that date, Pascale said.

Ward skimmed funds from a client account containing social security-related income used to help pay for the state’s cost of operating RICLAS facilities, in effect serving as contributions toward room, board, utilities and the like.

An earlier version of this article incorrectly described the purpose of the client account.

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 Rate Cuts To DD Providers Or Wait Lists For Services Loom Without More Funding For BHDDH

By Gina Macris   

Rhode Islanders with developmental disabilities would face “drastic measures” such as waitlists for services or reductions in the amounts the state pays private organizations providing these supports if their funding agency must resolve a sizeable budget deficit by the end of the fiscal year June 30.

Rebecca Boss                       Photo By Anne Peters

Rebecca Boss                       Photo By Anne Peters

Rebecca Boss, director of the agency, the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH), reached that conclusion in a Nov. 30  letter to the director of the state budget office and the finance committee chairmen of the House and Senate.

She pledged to keep working  “to minimize the anticipated disruptions and destabilization that would result from such measures on our vulnerable populations.”  In the last several years, the General Assembly has covered BHDDH deficits with supplemental funding.

The letter outlined a corrective action plan for reducing the deficit, an estimated $15.9 million in in state spending, including about $12 million from developmental disabilities programs and nearly $4 million from the Eleanor Slater Hospital. Without a state match, roughly the same amount in federal Medicaid dollars also would evaporate.

The corrective action plan described a variety of cost-cutting initiatives that at best, would address less than half the overall shortfall, but Boss’s letter did not add up the total savings. BHDDH officials were not able to respond immediately to several detailed questions about the corrective action plan. 

Corrective action plans are required whenever a state agency runs a deficit. But the BHDDH plan raises questions about its future ability to comply with a 2014 federal consent decree that requires Rhode Island to integrate adults with developmental disabilities in the community to comply with the Americans With Disabilities Act (ADA).

Integrated services, which require small staff-to-client ratios, are inherently more costly than the segregated, facility-based programming Rhode Island has used in the past, in which one person can keep an eye on larger groups of people gathered in one room.  An over-reliance on sheltered workshops and day centers put Rhode Island in violation of the ADA's integration mandate, which is spelled out in the Olmstead decision of the U.S. Supreme Court, according to findings of the U.S.Department of Justice.

Rhode Island has never been in complete compliance with the incremental integration goals of the consent decree and in the spring of 2016 came close to being held in contempt of court over lack of funding, among other issues. Since then, as long as the state has put additional money and professional expertise into efforts to improve services, it has avoided sanctions.

Most recently, during a U.S. District Court hearing Nov. 30 – the same day Boss turned over her corrective action plan – the judge in the consent decree case  repeatedly brought up his concerns about money to fund the services required by the consent decree. John J. McConnell, Jr. said he would be keeping an eye on the budget process, both at the state and federal levels.

The BHDDH plan proposes returning to the state a $2 million balance in funds that had been allocated to a performance –based supported employment program that responded to a court order to help more adults with developmental disabilities find jobs. In the plan, Boss said that BHDDH would continue to provide funding for supported employment. Anecdotal information from providers and families has indicated that, even with the performance-based program, employment services have not been available to all who wanted them.  

Boss, meanwhile, outlined other cost savings. She said correcting errors in the needs assessments of 46 adults with developmental disabilities will result in $400,000 in savings, once the individual funding authorizations for those persons are reduced.

Because of widespread complaints that the original assessment shortchanged individual needs, resulting in routine awards of supplemental funds, BHDDH adopted an updated version of the standardized interview about a year ago that was said to be more accurate.

The newer assessment contributed to higher per-person costs that are reflected in much of the $12 million projected deficit in developmental disabilities, Boss said. The 46 errors in assessment occurred because interviewers did not correctly utilize a certain group of questions in the new interview process, she said.  

At the start of the current fiscal year in July, with rising costs from the new assessment already apparent, BHDDH imposed stringent health and safety standards for awarding supplemental funds on appeal.

Of the $12 million projected deficit in developmental disabilities, $4 million is related to “various” cost-cutting initiatives in the current fiscal year which BHDDH does not expect to achieve, Boss said.

She did not describe these unachieved savings in any detail, except to attribute $500,000 to the department’s inability to move residents out of three of five state-run group homes that had been scheduled to close. The remaining two homes are special care facilities that are being consolidated and will close, Boss said. She has said such special care facilities do not comply with a new Medicaid Final Rule on Home and Community-Based Services.

In the last quarter of the fiscal year, beginning April 1,  BHDDH plans to cut the daily reimbursement rates for residents of group homes with relatively mild developmental disabilities, those assigned to the lowest two levels ( labeled A and B) of a five-tier funding scale. This measure is expected to save $200,000.

Additionally, BHDDH has a “continuing commitment” to reducing the population of group homes by 110 during the current fiscal year, which would bring an estimated savings of $900,000, Boss said. She did not elaborate.

In Rhode Island, the primary alternative to group homes is shared living, in which a person with a developmental disability lives with a family in a private home.

During the 27 months between July 1, 2015 and Sept. 20, 2017 the number of individuals in shared living increased by 92, according to BHDDH figures, from 268 to 360. The breakdown includes 40 in the fiscal year that ended July 1, 2016 38 in the fiscal year that ended July 1, 2017, and 14 in the first three months of the current budget cycle.

At the Eleanor Slater Hospital, all but $900,000 of the nearly $4 million shortfall can be attributed to salaries and benefits, including $2.1 million in overtime, Boss said.

The hospital has faced numerous problems, most critically a preliminary report from the Joint Commission in September that signaled Eleanor Slater would be denied accreditation because of unsafe facilities. The report prompted an increase in staffing so that patients are checked every five minutes.

BHDDH plans to move patients out of the substandard facilities, but that consolidation is behind schedule.

 

RI BHDDH Running Projected $34.6 Million Deficit; DD Services Account for $26 Million Of Shortfall

By Gina Macris

Rhode Island’s efforts to improve services to adults with developmental disabilities - spurred by ongoing federal court oversight – will result in cost overruns of almost $26 million by next June, the end of the current fiscal year, according to projections from the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

The projected $26 million shortfall is the largest in recent memory for developmental disability services, which typically have run $4 to 6 million over budget during a fiscal year.

In the first quarter spending report to the State Budget Officer, Thomas Mullaney, Rebecca Boss, the BHDDH director, said there are two main drivers of the projected deficit:

  • Increased costs attributed to an updated assessment for clients of the Division of Developmental Disabilities, the Supports Intensity Scale–A, or SIS-A, which is generally regarded as more accurate than the previous version in capturing individuals’ support needs, particularly for those with complex medical and behavioral issues.
  • An increase in supplemental authorizations that represent successful appeals of funding levels awarded through fiscal calculations made from the results of the original SIS or the SIS-A.  

BHDDH has asked the state Budget Office to consider a supplemental appropriation for the current budget cycle to cover much of the shortfall, with Boss saying the increased spending is consistent with current caseload projections.

But BHDDH also proposes cutting about $5 million from supplemental appropriations before next June 30. Boss has ordered officials to deny requests from individuals with developmental disabilities for supplemental funding, except in emergencies related to health and safety, including the risk of hospitalization. She also made an exception for any “court-ordered services” which may occur.

The order to hold the line on supplemental funds is likely to have widespread impact on individuals and their families, who must make the same request for extra money annually if they believe they have been shortchanged by the SIS or the SIS-A.  Alternatively, they may request a re-assessment.

In her letter to Mullaney, Boss said BHDDH is working to address the current year’s projected deficit and is determining “potential courses of action which would meet client needs, be accountable to regulatory entities, and meet fiscal constraints.”

The Office of Management and Budget is working with BHDDH to “thoroughly review its options,” a spokeswoman for Mullaney said Nov. 9.

BHDDH requested $22 million for supplemental payments in the current budget, according to testimony before the General Assembly last spring.

But in a recent corrective action plan, the department said it authorized over $28.2 million in supplemental payments – more than 10 percent of all payments to private providers - during the fiscal year that ended last June 30. Actual expenditures exceeded $22.3 million.

“The past volume and approval of supplemental authorizations is unsustainable,” BHDDH said.

The plan sets a limit of $18.6 million for supplemental payments in the current budget cycle and reduces the ceiling to $14.4 million in the fiscal year beginning next July 1, with the assumption that the number of requests for supplemental payments will decline as more clients are assessed through the updated SIS-A. 

The corrective action plan also notes that requests for supplemental funds that are denied by BHDDH may be appealed to the Executive Office of Health and Human Services.

The projected $26 million shortfall in the Division of Developmental Disabilities represents the lion’s share of an overall $34.6 million departmental deficit, based on first-quarter spending, which Boss outlined in an Oct. 27 letter to Mullaney, the State Budget Officer.

The state is under pressure from the U.S. District Court to improve the quality of its daytime services for adults with developmental disabilities by moving its system from isolated day centers and sheltered workshops to supported employment at regular jobs paying minimum wage or higher. Rhode Island also must increase the availability of integrated non-work activities. These mandates are spelled out in two agreements with the U.S. Department of Justice, in which the state must correct correct an overreliance on segregated facilities that violates the Americans With Disabilities Act.

The original SIS, accompanied by a $26 million reduction in developmental disability funding, was introduced by BHDDH and the General Assembly in 2011 as an equitable way of distributing available resources, although advocates complained that it was nothing more than a device to control costs, at the expense of some of Rhode Island’s most vulnerable citizens.

In succeeding years, that dollar amount was restored, but the service system was fundamentally altered, resulting in wage cuts, higher worker turnover, and a dependence on lower–cost services in segregated facilities that can be supervised with fewer staff.  The U.S. Department of Justice began its investigation into these facilities - sheltered workshops and day centers - in 2013.

On an individual basis, persons with developmental disabilities, their families, and service providers routinely appealed the funding awarded through the SIS, and at one point supplemental payments became routine.

In the meantime, there were were so many complaints about the SIS that the department ultimately decided to shift to the SIS-A.

But 13 months ago, when BHDDH submitted projections that ultimately went into the current budget, it had no experience with the SIS-A. The revised assessment was introduced in November, 2016. By springtime of this year, however, Boss had enough data to tell legislators that the SIS-A was resulting in higher per-person funding allocations. And she reported that the overall numbers of individuals using  developmental disability services was on the rise.

For the future, Boss envisioned a shift away from supplemental payments as the revised assessment tool better responds to individuals’ funding needs.

Of the overall $34.6 million projected BHDDH deficit, nearly $8.7 million can be attributed to staffing and overtime increases at the Eleanor Slater Hospital for stepped-up patient monitoring in light of a recent warning that the facility may lose accreditation because aging buildings pose too many risks that patients may harm themselves. A risk assessment for the Eleanor Slater Hospital is currently underway, and the results will inform a request for supplemental funding to remedy concerns of the hospital accrediting agency, the Joint Commission, Boss said.

Click here for the BHDDH first quarter spending report.

RI Supported Employment Services Hampered By Lack of Trained Workers, High Caregiver Turnover

By Gina Macris

About 60 percent of all those who start training at Rhode Island College to provide supported employment services to adults with developmental disabilities drop out of the certificate program,  a factor that threatens reform efforts embodied in two federal civil rights agreements.

The drop-out rate in the training program at RIC’s Sherlock Center on Disabilities underlines a shortage of direct care workers in general and in particular a lack of staff qualified to meet the demand from adults with developmental disabilities for employment-related services and to satisfy the requirements of a 2014 federal consent decree and a companion settlement a year earlier.

The specialized training at the Sherlock Center includes classes and field experience in the nuances of supported employment services, from the time an individual starts looking for a job to on-the-job assistance, long-term career planning, and building good relationships with the business community.

The Sherlock Center is under contract with the state to lead the way in educating those who work with adults having developmental disabilities in the best professional practices, consistent with the principles of the consent decree, which puts individuals’ needs and personal preferences at the center of the services they receive.

Workers must successfully complete a course like the Sherlock Center’s before the state will allow private service providers to assign them to help job-seekers find employment that suits them and the businesses that hire them. The Sherlock Center offers its training tuition-free to those who plan to work in one of two pilot supported employment programs;  one funded by the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH),  and another run by the Office of Rehabilitation Services in the Department of Human Services.

The topic of supported employment, primarily the BHDDH program, dominated the discussion at the monthly meeting of the Employment First Task Force Oct. 10. The Task Force is a creation of the 2014 consent decree, which requires Rhode Island to shift from sheltered workshops and segregated day programs to inclusive day services, in accordance with the 1999 Olmstead decision of the U.S. Supreme Court. The decision re-affirmed the integration mandate of the Americans With Disabilities Act.

Vicki Ferrarra                   photo by Anne Peters 

Vicki Ferrarra                   photo by Anne Peters 

The task force includes representatives of individuals with developmental disabilities, their families, and various community organizations with a stake in the developmental disability service system.  

Vicki Ferrara, who represented the Rhode Island Association of People Supporting Employment First (RI APSE), a professional organization, said there was a 40 percent completion rate in the Sherlock Center training program.

She works as the Sherlock Center’s coordinator for integrated employment.  The group she represented at the meeting is part of a national organization involved in setting professional-level standards for various aspects of supported employment services.

Ferrarra said some direct care workers complete the supported employment training and then leave the field of developmental disability services entirely, often because of low wages.  

Others drop out of the course because they find the work too challenging, she said.

Still others cannot complete the classes or field work because the shortage of direct care workers is so acute that their employers call them in to cover vacant shifts on the job for basic health and safety reasons.

Ferrara said the state does not pay for substitutes while the regular caregivers are in class.

She said the direct care workforce must be stabilized before the state gains enough qualified job coaches,  job developers and supported employment specialists.

Many new hires leave when they realize the job of providing direct support to adults with developmental disabilities is complicated and carries many responsibilities. The average wages are estimated at about $11.50 an hour, including a pay bump of 36 cents an hour that is being processed by the workers’ employers this month. 

The average turnover ranges from 60 percent in the first six months to about 30 percent over 12 months, according to figures presented to the General Assembly earlier this year.

Ferrarra said workers should have at least six months’ experience, learning the basics of direct care, before they are sent to train for specialized credentials. In at least some parts of the service system, new workers get acclimated by working under supervision with just a few specific clients, learning their needs and preferences and strategies for cope with any challenges they might present.

But Ferrara said some workers arrive at the Sherlock Center for specialized employment-related training during their first week on the job.

In September, an official of the supported employment program run by BHDDH reported that the enrollment of individuals seeking jobs was 92 short of the available spaces, a maximum of 517. (Click here for related article.) 

On Oct. 10, Howard Cohen, a member of the Task Force who is the father of a man with developmental disabilities, said a lack of qualified staff has come up repeatedly when he has participated in other discussions about supported employment.

Ferrara provided information on the three-part training program at the Sherlock Center as the Employment First Task Force was considering recommendations it planned to make to the state about the future of supported employment services.  

Instead, questions arose on details that needed clarification, like how the clients for supported employment services have been selected, and how families that hire their own workers through a fiscal intermediary to support their loved ones can get broader access to these services. 

Brian Gosselin, Chief Strategy Officer for the state Executive Office Of Human Services, urged the task force to put its questions in writing and submit them to the state. Gosselin was involved in the design of the BHDDH supported employment program.  That pilot will complete its first program year at the end of December and is under evaluation. By year’s end, the ORS program also will be well into the second half of its initial 12-month run.

 

 

RI Has Missed Two Court-Ordered Deadlines For Holding Troubled Fedcap Agency Accountable

By Gina Macris

Continuing difficulties at the former sheltered workshop that stood for everything wrong with Rhode Island’s developmental disability system have caused new noncompliance problems for the state in U.S. District Court. 

The problems revolve around one private agency, Community Work Services (CWS), a program of the New York-based Fedcap Rehabilitation Services. But the state is accountable to the court for the way it manages its service vendors and for ensuring that adults with developmental disabilities receive high quality supports under provisions of 2013 and 2014 agreements with the U.S. Department of Justice (DOJ).

 In both settlements, Rhode Island agreed to end segregation of adults with developmental disabilities – a violation of the Americans With Disabilities Act (ADA) – and instead to offer them the choice of supported employment and integrated non-work activities.

Community Work Services (CWS) was hired in 2013 to correct ADA violations at the former sheltered workshop, Training Through Placement (TTP.)  But CWS itself has operated under one form or another of state supervision for 17 months and nearly lost its license earlier this year.

Missed Deadlines

According to the latest report of a federal court monitor, the state has missed two deadlines; one, a July 30 date for improving the quality of individual career plans and another, June 30, for verifying the accuracy of data reported by CWS on its clients’ progress. 

Despite the state’s efforts to resolve inconsistencies in data, “problems continue to exist with the information provided by CWS,” according to a Sept. 7 report  by the monitor, Charles Moseley, to U.S. District Court Judge John J. McConnell.  

The state, the monitor, and the DOJ use that data to determine whether CWS is following the requirements of the ADA agreements. 

Blueprints For The Future

And so-called “career development plans” are not supposed to be just paperwork, but blueprints that allow officials to see in an instant how the services a client currently receives fit into individualized short-term and long-term goals. 

The plans are intended to reflect a key principle embodied in the ADA; that people with disabilities have choices in how they live their lives.  

The monitor also said 70 percent of the clients’ career plans were “unacceptable” and had not been improved in the month after the judge’s July 30 deadline, despite the state’s efforts.

For most of the 64 Individuals who are active CWS clients, the daily activities and yearly individual service plans didn’t line up with the long-range career development plans, according to Moseley.  

In other cases, the long-range plans were “well done”, but the plans were “not being implemented in a manner which aligns with the participants’ interests,” Moseley said.

Neither the DOJ nor the judge have responded on the record to Moseley’s latest findings, although McConnell has said in the most recent hearing on the so-called “interim settlement agreement” of 2013 that he considers himself personally responsible for defending the rights of about 125 individuals protected by the agreement.

Former State Official Now Heads CWS

Community Work Services, a Boston-based agency, came to Rhode Island in 2013 as a program of Fedcap, hired by Craig Stenning, then director of the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) to get a jump start on turning around the state’s developmental disability system in the wake of the interim settlement agreement of 2013 and the broader consent decree of 2014.

Between 2013 and 2014, Fedcap was awarded a total of about $1.7 million in state contracts. In 2015, Stenning joined Fedcap’s senior management.

As part of the state’s arrangement with Fedcap, CWS took over Training Through Placement (TTP), which had used the Birch Academy at Mount Pleasant High School as a feeder program for its sheltered workshop. There, adults with developmental disabilities performed repetitive tasks at sub-minimum wages, sometimes for decades, even when they expressed a desire to do something else.

At the hearing in May, Moseley, the monitor, told the judge that the number of former TTP clients who have found regular jobs in the community has remained “essentially flat” for the last four years. Most of the former TTP clients still received services from CWS. 

At that point, CWS itself had operated under one or another form of state supervision since May, 2016, for both programmatic deficiencies and substandard facilities at the former TTP building in North Providence.

CWS Nearly Lost License

In his most recent report Sept. 7, Moseley disclosed that state officials had notified CWS in early May – about two weeks before the federal court hearing - that they intended to revoke the agency’s license. But state officials changed their minds after a conference with CWS representatives, the monitor said.

Instead of revoking the license, the state Division of Developmental Disabilities (DDD) decided to give CWS one last chance by continuing the agency’s probationary status from July 1 to Sept. 30, with the possibility of only one more extension, until Dec. 31. The current status of the license is not clear. 

Moseley said CWS has brought on new staff, including a deputy director, a job developer and a new position with responsibilities for data and reporting.

According to the CWS website, it also has a new executive director, Craig Stenning, Fedcap’s Senior Vice President for the New England Region and the former BHDDH director.

Less than a year after Stenning’s departure from BHDDH – Governor Gina Raimondo failed to reappoint him – the DOJ and the monitor asked the U.S. District Court for assistance in enforcing the companion agreements of 2013 and 2014, citing a lack of progress by the state.

As a result, McConnell took up the combined cases and held the first hearing in January, 2016. Since then, he has held periodic reviews from the bench.   

Extensive State Oversight

Moseley’s Sept. 7 report described the extensive state supervision dedicated to CWS.  Licensing officials make monthly regulatory reviews of CWS. In addition, there are unannounced monthly visits coordinated with the state’s chief quality improvement officer for developmental disabilities. Supplementary phone calls and emails from state officials to CWS occur at least once a week.

Meanwhile, the state’s chief employment officer for developmental disabilities provides on-site technical assistance to CWS job developers, reviewing day-to-day activities and observing so-called “person-centered” planning meetings that are designed to put the needs and preferences of the clients first.

In earlier reports, Moseley has said the state simply does not have enough personnel to provide a fully functioning quality assurance program across the board to verify that some three dozen service providers are complying with the “person-first” principles and practices of the ADA. He has required DDD to take steps to create one.

DDD has 24 caseworkers and a handful of supervisory personnel and support staff to manage the needs of a total of about 4,350 individuals.  (About 3,700 receive day-to-day services,)

After learning that there had been little change at CWS since 2013, McConnell said he was angered on behalf of those who are “years late in terms of getting the services that the state agreed to,” according to a transcript of the hearing on May 23.

Addressing lawyers and state officials before him, he said, “The truth is that we all, you and you and me and then everybody else, have these hundred-odd people’s rights in our hands. “

McConnell continued. “I don’t take that lightly. I will use whatever powers that I have available to me to ensure that those individuals aren’t forgotten. Dr. Moseley always reminds me that we’re talking about individuals here and not alphabet soups and programs and whatnot. And this time it’s got to stick.”

Praise For Providence and Mount Pleasant

McConnell concluded on what he described as an “optimistic note” for officials of the city of Providence, who during the last few years have made substantial changes at Mount Pleasant High School, enabling special education students who otherwise would have been completely isolated to become part of the broader student body and to have school-to- work experiences in the community.

“Keep up the good work,” the judge told school and city officials. “It doesn’t mean you’re at the finish line, but you’ve showed us that it can be done.” 

A version of this article also appears in ConvergenceRI

 

 

Therap Gets RI Contract For DD Electronic Records

By Gina Macris

Therap Services of Waterbury, CT., a specialized information technology company, has won a contract worth $1,320,000 over three years, or $440,000 a year, to create an electronic case management system for the Rhode Island Division of Developmental Disabilities (DDD).

The conversion to electronic records is expected to make record keeping much simpler for state social workers and private providers and to greatly improve data collection for the U.S. District Court. Through an independent monitor, the Court is tracking implementation of integrated, community-based services for adults with developmental disabilities under provisions of a 2014 consent decree enforcing the U.S. Supreme Court’s Olmstead decision, which reinforces the Americans With Disabilities Act.

Kerri Zanchi, Director of Developmental Disabilities, could not say exactly how long the new system will take to roll out but estimated it might be 18 months to two years before it is fully implemented. Some parts of the system might be operational earlier, she said.

The electronic case management system will give state social workers and private service providers shared online access to the records of each client receiving federal and state-funded Medicaid services through the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).  

Zanchi said Therap also offers a module to give families access to records, “but what it does and how we’ll use it, we’re not there yet. I couldn’t speak to that today,” she said in an interview in mid-September. A family module would not cost the state additional money, according to a spokeswoman for Zanchi.

Zanchi said DDD wants to build an electronic record system that responds to current operations and consent decree requirements.

“Our (DDD) system is changing and as it is changing we need to be evaluating the outcomes,” she said.

There is a work group which includes both state social workers and private service providers to help identify “the specific data needs” that must be built into the electronic records system, she said.

Rebecca Boss, the BHDDH director, said that “as much as we can do to expedite this, we will. We want to have this up and running as soon as possible.”

The lack of adequate data has made it difficult for the U.S. Department of Justice and the consent decree monitor to evaluate the state’s implementation efforts. About a year ago, the state devised an method of working around the limitations of the existing 30-year-old data system that can respond to specific questions from the monitor or the DOJ, but not on a real-time basis.

This patchwork approach enlists data collected quarterly by the Sherlock Center on Disabilities at Rhode Island College.

Therap and seven other vendors submitted applications for the electronic records contract in the fall of 2016. Zanchi and Boss said the contract was awarded at the end of the summer.

Therap also holds an electronic records contract for the investigatory unit of BHDDH, which deals with complaints of neglect and abuse. That contract was awarded in 2016, but no other details were immediately available.

Therap’s website describes the company as the leading provider of electronic health records for people with intellectual disabilities, with customers in 50 states and foreign countries.

This article has been updated with additional details on the Therap contract and those working with Therap to roll out the system. 

 

Two Pilot Programs, Two Approaches to Supported Employment, Aired at RI DD Task Force Meeting

By Gina Macris

(This article (been corrected.)

Between January and mid-August, about one in four Rhode Islanders with developmental disabilities who were enrolled in a new supported employment program landed jobs, with help from private service agencies funded through the state Division of Developmental Disabilities (DDD).

But there are signs of strain on the ability of these agencies to train the workers they need to continue to deliver results over the long haul.

 In the meantime, the Office of Rehabilitation Services (ORS) has started a much smaller pilot project , now in its second quarter of operation.

The two pilots take different approaches to funding employment-related supports for adults with developmental disabilities.

The DDD program adopts a fee-for service reimbursement model – based on the severity of a client’s disability - and a complicated billing mechanism that is similar to the one set up six years ago by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) for funding all developmental disability payments to private providers.

There is no provision for funding up front to support agencies’ costs for training workers to provide employment-related services.

The ORS project offers a flat rate of $7,000 per client, with $1750 up front so provider agencies can train and assemble a team of employment specialists. Providers are eligible for two additional quarterly payments of $1750 as long as they document the progress the clients are making.  A final payment  of  $1750 is awarded at the end of a year’s time only if the client has landed a job.

According to a recent report to a federal court monitor, state officials are evaluating both the ORS and DDD approaches to determine “what aspects of each model work for providers, what challenges exist, and how ongoing efforts of the two agencies can be coordinated.”

Tracey Cunningham and Joseph Murphy

Tracey Cunningham and Joseph Murphy

Joseph Murphy, an administrator at ORS in the Department of Human Services, and Tracey Cunningham, Chief Employment Specialist in the developmental disabilities division at BHDDH, gave status reports on their respective programs at the monthly meeting of the Employment First Task Force Sept. 12.  

Cunningham said that between January and mid-August, the DDD program found jobs for 116 of a total of 425 adults with developmental disabilities who were enrolled. Nine others found jobs that didn’t work out, Cunningham said, and they are looking for better matches.

The program could take on an additional 92 clients, up to a maximum of 517, according to figures provided by Cunningham. However, service providers are having trouble lining up the trained staff to expand their rosters and want to focus instead on doing a good job with the clients they already have, Cunningham said.

Claire Rosenbaum, Adult Services Coordinator for the Sherlock Center on Disabilities at Rhode Island College, said one training course was cancelled recently for lack of enrollment. The Sherlock Center has a contract with the state to provide the needed training tuition-free.

In addition, the “self-directed” families, those who manage services independently for loved ones, are having a difficult time finding properly trained job developers and job coaches, Rosenbaum said. 

Cunningham said about 90 percent of “self-directed” families who seek supported employment services purchase them from private agencies.  But Rosenbaum said families are having difficulty identifying agencies able to help them.

Cunningham said three agencies are accepting clients from “self-directed” families:  Goodwill Industries, Work, Inc., and a new program called Kaleidoscope.

Nicole Kovite Zeitler

Nicole Kovite Zeitler

Nicole Kovite Zeitler, a lawyer for the U.S. Department of Justice who monitors supported employment in conjunction with a 2014 consent decree enforcing the Americans With Disabilities Act (ADA), asked what was driving the providers’ inability to expand.

 Low salaries are the primary reason, said Donna Martin, executive director of the Community Provider Network of Rhode Island, a trade association representing about two thirds of the private agencies providing services in Rhode Island.

She said aging baby boomers also are creating an increased demand for direct care workers. Turnover is high – about 35 percent - and one in six jobs goes vacant in the developmental disability system, she said.

The General Assembly this year enacted the second consecutive raise for direct care workers. (Read related article here.)

But the increase, an estimated 42 cents an hour before taxes, is not expected to make a significant difference in the existing subsistence-level wages. Nor will it be any easier for developmental disability agencies to hire or keep new workers.

Meanwhile, the funding for the DDD supported employment program has been greatly under-utilized, even while the developmental disability service agencies have struggled to hire and train enough workers. (Read related article here.)                                 

The DDD program provides increased allowances for  job-seekers, based on the degree to which they lack independence,  but  most of the expenditures are set-aside for one-time performance bonuses to the agencies when:

  •  A job coach or job developer completes training
  •  A client gets hired
  •  A client remains employed for 90 days
  •  A client remains employed for 180 days.

Agencies receive $810 for each worker who has completed training. The remainder of the bonuses are arranged on a sliding scale, depending on the severity of the client’s disability, with the largest payments resulting from placement and retention milestones for those with the most complex needs.

Excluding any reimbursements for worker training, which were not part of the original design of the DDD program, the average maximum one-time reimbursement was initially projected to be $9,700 for young adults and $15,757 for older adults – those who left high school before 2013. Any updated figures were not immediately available.

The pilot operated by the state Office of Rehabilitation Services (ORS)  works with seven developmental disability service agencies to help a total of 49 clients find jobs. Five have had success so far, Joseph Murphy, program administrator, told task force members.

The ORS program, which receives technical assistance from Salve Regina University in Newport,  is now in the second quarter of the program year, while DDD program is in the third quarter. 

The ORS program considers a successful placement to be a minimum of ten hours a week in competitive, integrated employment in the community, although Murphy said Sept. 14 that it accepts clients no matter how many hours' work they seek. The ORS program offers a $1,000 bonus for job placements that exceed 20 hours a week and last at least six months. In the DDD program, a successful placement may involve fewer than 10 hours' work a week.

Victoria Thomas

Victoria Thomas

The employment goal of the consent decree is an average of 20 hours a week of work at minimum wage or higher, although DOJ lawyer Victoria Thomas said there are no hourly employment requirements in the ADA.

“It just says people with developmental disabilities should have the option of integrated services,” she said.

The consent decree resulted from findings of the DOJ in 2014 that the state’s developmental disability services  over-relied on segregated sheltered workshops paying sub-minimum wages and non-work programs resembling day care.  As part of a system-wide overhaul, the state must support increasing numbers of adults with developmental disabilities in competitive employment in the community through Jan. 1, 2024.

The Employment First Task Force was created by the consent decree to serve as a bridge between state government and the community.

All photos by Anne Peters

This article has been corrected to reflect the fact that the up-front payment to providers in the ORS supported employment program is $1,750, one quarter of the total $7,000 allocation per client. In a clarification, Joseph Murphy, the program administrator, said it accepts clients no matter how many hours a week they seek competitive employment, even though a placement must be for at least ten hours a week to be considered successful for the purposes of the program.

Four Years After Settlement, Former Workshop Still Segregates Adults With DD - Monitor

photo by gina macris

photo by gina macris

Former Training Through Placement building at 20 Marblehead Ave., North Providence RI

By Gina Macris

A federal judge has taken the state of Rhode Island to task for failing to keep track of a former sheltered workshop that has continued to segregate adults with developmental disabilities, despite a landmark integration agreement four years ago that seeks to transform daytime services for those with intellectual challenges.

An order by Judge John J. McConnell, Jr. of U.S. District Court sets strict deadlines between the end of June and the end of July for specific steps the state must take to ensure that all clients of the former sheltered workshop lacking jobs or meaningful activities begin to realize the promise of the 2013 agreement.

The so-called Interim Settlement Agreement of 2013 focused primarily on special education students at the Birch Academy at Mount Pleasant High School and adult workers at Training Through Placement (TTP), which has become Community Work Services (CWS.)

The former sheltered workshop used Birch as a feeder program for employees, who often were stuck for decades performing repetitive tasks at sub-minimum wages – even when they asked for other kinds of jobs. Involved are a total of 126 individuals, according to McConnell’s count.

In 2014, after a broader investigation by the U.S. Department of Justice, the state signed a more extensive consent decree covering more than 3,000 adults and teenagers with developmental disabilities. The state promised to end an over-reliance on sheltered workshops throughout Rhode Island and instead agreed to transform its system over ten years to offer individualized supports intended to integrate adults facing intellectual challenges in their communities.

Together, the companion agreements made national headlines as the first in the nation that called for integration of daytime supports for individuals with disabilities, in accordance with the Olmstead decision of the U.S. Supreme Court. The Olmstead decision re-affirmed Title II of the Americans With Disabilities Act, which says services must be provided in the least restrictive setting which is therapeutically appropriate, and that setting is presumed to be the community.

McConnell’s order is the latest and most forceful development in a story that highlights not only the failings of the former sheltered workshop, Training Through Placement (TTP), but the state’s lack of a comprehensive quality assurance program for developmental disability services system-wide.

The former sheltered workshop run by CWS at 20 Marblehead Ave., North Providence, was closed by the state on March 16 on an emergency basis because of an inspection that showed deteriorating physical conditions. Individuals with developmental disabilities were “exposed to wires, walkways obstructed by buckets collecting leaking water, and lighting outages due to water damage,” according to a report to the judge. At that point, CWS had been working under state BHDDH oversight for about a year, because of programmatic deficiencies, according to documents filed with the federal court.

CWS is a program of Fedcap Rehabilitation Services of New York, which had been hired by then-BHDDH director Craig Stenning to lead the way on integrated services for adults with developmental disabilities at TTP in the wake of the 2013 Interim Settlement Agreement. Stenning now works for Fedcap.

With the CWS facility closed by the state, the program resumed operations on March 21 in space provided by the John E. Fogarty Center in North Providence under terms of a  probationary, or conditional, license with state oversight, according to a report of an independent federal court monitor overseeing implementation of  the 2013 and 2014 civil rights agreements in Rhode Island that affect adults with developmental disabilities.

The monitor said the state licensing administrator for private developmental disability agencies also notified the CWS Board of Directors and the Fedcap CEO of the situation, making these points:  

  • the state was concerned about unhealthy conditions of the CWS facility
  • ·the agency failed to notify the state of the problems with the building
  • CWS failed to implement a disaster plan
  • ·The CWS executive director had an “inadequate response” to the state’s findings.

The letter to the Fedcap CEO also said that CWS had been providing “segregated, center-based day services” rather than the community-based programming for which the agency had been licensed.

Summarizing the status of the 2013 Interim Settlement Agreement, the monitor, Charles Moseley, concluded in part that the Providence School Department and the Rhode Island Department of Education have continued to improve compliance through added funding, an emphasis on supported employment, staff training and data gathering and reporting.

Overall, the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, (BHDDH) the Executive Office of Health and Human Services, (EOHHS) and the state Office of Rehabilitation Services (ORS) also have made progress, Moseley said, citing budget increases, new management positions, and programmatic changes he has mentioned in various status reports on the statewide consent decree.

However, progress for clients of the former TTP workshop “appears to have plateaued and possibly regressed,” Moseley wrote, and for that he faulted the successor agency, CWS, and the lack of sustained oversight on the part of BHDDH. 

While some former sheltered workshop employees at TTP did find work after the Interim Settlement Agreement was signed in 2013, “the number and percentage of integrated supported employment placements has remained essentially flat for the last four years,” he said.

Efforts to reach CWS and Fedcap officials were unsuccessful.

In mid-March, CWS  reported that 30 of 71 clients on its roster had jobs. Of the 30 who were employed, 13 with part-time jobs also attended non-work activities sponsored by the agency. In addition, 41 clients attended only the non-work activities.

In early April, Moseley and lawyers from the DOJ interviewed the leadership and staff of CWS and some of the agency’s clients in their temporary base of operations at the Fogarty Center. Serena Powell, the CWS executive director, was among those who attended, Moseley said.

The leadership “revealed a lack of understanding of the basic goals and provisions of the state’s Employment First policy and related practices,” Moseley said in his report.

Rhode Island has adopted a policy of the U.S. Department of Labor which presumes that everyone, even those with significant disabilities, is capable of working along non-disabled peers and enjoying life in the community, as long as each person has the proper supports.

“This lack of knowledge and understanding appeared to extend to the basic concepts of person-centered planning (individualization) and program operation,” Moseley said, citing the names of specific protocols used by state developmental disability systems and provider agencies “across the country.”

Moseley said some CWS staff do not have the required training to do their jobs.

Some job exploration activities have consisted of “little more than walking through various business establishments at a local mall,” Moseley said, explaining that they were not purposeful activities tailored to individual interests and needs.

Moseley said he interviewed three clients of CWS and they were “unanimous in their desire to have a ‘real job’ in the community and to be engaged in productive community activities that didn’t involve hanging out with staff at the mall.

“All three persons reported that they were pleased to be out of the CWS/TTP facility and to have opportunities to go into the community more often. Two of the three expressed an interest in receiving services from a different service provider,” Moseley said.

The state has had four years to work on compliance with the Interim Settlement Agreement and the Consent Decree. During that time, BHDDH has seen three directors and its Division of Developmental Disabilites (DDD) has had four directors, including an outside consultant who served on an interim basis part of the time officials conducted a search that led to the appointment of Kerri Zanchi in January.

Between mid-February and early May, there was a separate upheaval in the leadership of the Executive Office of Health and Human Services, which had taken charge of the state’s compliance efforts in connection with the 2013 and 2014 civil rights agreements.

In a statement to the court, Zanchi alluded to all the turnover, saying that “progress has been challenged due to changes in internal and external leadership impacting stability, communication, resources, accountability, and vision.” 

Zanchi suggested that budget increases and considerable effort among BHDDH and ORS staff during the last year to improve compliance nevertheless have not been enough to make up for the previous three years of inaction.

Among other things, there is no consensus across the network of private service providers – some three dozen in all – “regarding the definition and expectation of integration,” Zanchi said.

DDD is responding by establishing “clear standards, training and monitoring,” she said. McConnell’s order required DDD to complete “guidance and standards for integrated day service” by June 30 and allowed another month for the document to be reviewed and disseminated to providers.

Zanchi said the state now has an “extensive quality management oversight plan” with CWS that involves DDD social workers, who are actively supporting CWS clients and their families. These same social workers also have average caseloads of 205 clients per person, according to the most recent DDD statistics.

Zanchi agreed with Moseley, the court monitor, that “current review and monitoring does not constitute a fully functioning quality improvement program.”

Moseley said that DDD’s quality improvement efforts “are seriously hampered by the lack of sufficient staff.” He called for “additional staffing resources” to ensure quality, provide system oversight and improve and ensure that providers get the required training.

Zanchi said an outside expert in interagency quality improvement is working with the state to develop and implement such a fully functioning plan. McConnell gave the state until July 30 to have a “fully-developed interim and long-term quality improvement plan” ready to go.

Of the 126 teenagers and adults McConnell said are protected by the 2013 Interim Settlement Agreement, 46 need individualized follow-up. Of the 46, 34 have never been employed, including 24 former TTP workers and 10 current Birch students or graduates.

The judge reinforced the monitor’s repeated emphasis over the last two years on proper planning as the foundation for producing a schedule of short-term activities and long-term goals that are purposeful for each person, whether they pertain to jobs, non-work activities, or both.  

These planning exercises, led by specially trained facilitators, can take on a festive air, with friends and family invited to share their reminiscences and thoughts for the future as they support the individual at the center of the event.

McConnell’s order said the state must ensure that “quality” planning for careers and non-work activities is in place by July 30 for active members of the protected class who want to continue receiving services.

Among CWS clients, the agency reported that 10 have indicated a reluctance to go into the community, perhaps because they feel challenged by the circumstances.

Moseley cited a variance to the Employment First policy developed by the state to cover those who can’t or don’t want to work, for medical or other reasons. Moseley’s report said he approved the variance in 2015, but it hasn’t been implemented. He acknowledged that it was difficult to understand.

McConnell’s highly technical and detailed order requires the state to implement a “variance and retirement policy” by June 30 “to discern specifically those who do not identify with either current or long-term employment goals.” 

McConnell also ordered the state to fund an additional $50,000 worth of training from the Sherlock Center on Disabilities at Rhode Island College so that those who work with adults with developmental disabilities can give them individualized counseling about how work would affect their government benefits.

The monitor has repeatedly cited a dearth of individualized benefits counseling. In his latest report, he wrote that in interviews May 11 and May 12, high school students at Birch, their parents, staff, and others expressed the false conviction that students could work no more than 20 to 25 hours a week without compromising their benefits.

"This finding underscores the importance of individualized benefits planning for this population to ensure that students are able to take full advantage of Social Security Act work incentives that may enable them to work more than 25 hours per week while maintaining their public and employer benefits," Moseley said.

The monitor is expected to evaluate compliance with the deadlines in McConnell's latest order in a future status report.

 

Lack of Resources Underlies Problems with Supports Intensity Scale, Other RI DD Issues

photo by anne peters  

photo by anne peters  

Eileen Vieira and Greg Mroczek both express concerns about the assessment used to determine funding for their adult children with developmental disabilities. 

By Gina Macris

The issue of resources – a scarcity of services and the money to finance them – ran like a thread through a public forum on Rhode Island’s developmental disability system Nov. 9 that brought together families, provider agencies and state officials. 

At the same time, participants applauded the willingness of new roster of state developmental disability officials to listen to their concerns.

Much of the discussion, during the meeting at the Cherry Hill Manor Nursing and Rehab Center in Johnston, concerned an assessment called the Supports Intensity Scale (SIS) that is used to assign individual funding packages to those persons receiving services.

“If there was adequate funding to pay for the needs” identified by the assessment, ”we would have much fewer problems with the SIS,” said Tom Kane, CEO of AccessPoint RI, a service agency.

“There’s not enough money there,” he said.

 Kane and others expressed skepticism about the accuracy of the assessment.

For example, Greg Mroczek said his son and daughter are very similar in their disabilities and needs, and yet they were assigned different funding levels.

“It flies in the face of the accuracy of the tool,” he said.

Eileen Vieira, who has a son with developmental disabilities, said some people who do the assessments “have no clue.”

They are not familiar with the person’s medical conditions or mental health issues or what is happening in the client’s life, she said. She said she did not believe the SIS captured her son’s need for behavioral support.

Heather Mincey, administrator in the Division of Developmental Disabilities, acknowledged that “a lot of times the SIS administrators did not get all of the information” necessary to make an accurate assessment of a person’s needs.

Heather Mincey

Heather Mincey

On Nov. 6, the Division switched over to a new form of the SIS which Mincey said she believes “will help a lot.” Called the SIS-A, the assessment is designed to capture behavioral and medical needs that were sometimes not apparent in results of the original SIS, according to Mincey. 

Kane said he has “never been a cheerleader for the SIS.”

The developer of the SIS, the American Association on Intellectual and Developmental Disabilities (AAIDD), maintains it differs from other assessments because it focuses not on shortcomings but on the supports an individual needs to be successful at a particular task.

Kane, however, said most family members and professionals in the field of developmental disabilities find it difficult to talk about the issues raised in the questions because “you have to examine what’s wrong” to arrive at the necessary supports.

“It’s a deficit-based tool,” he said.

A representative of AAIDD will visit Rhode Island to explain the SIS-A at an information and training session Nov. 17. (See related article.)

Mincey, meanwhile, encouraged parents to file appeals if they believe the SIS results for their sons or daughters are inaccurate – or if they have problems with a shortage of funds for transportation or other issues.

But Vieira indicated that the appeals are continuous and time-consuming, especially for parents who have full time jobs. “You have to appeal and you have to appeal,” she said. 

Brian Gosselin, Chief Strategy Officer for the Executive Office of Human Services, said developmental disabilities officials will use feedback from appeals of decisions on the SIS, along with experiences trying to solve other problems, to improve the system.

In whittling down a backlog of 224 applications for adult developmental disability services, for example, workers learned that nearly half the submissions did not contain all the required documentation, Gosselin said.  That experience will result in a redesign of the application process, he said.

Carla Russo

Carla Russo

An independent court monitor in a federal consent decree mandating expansion of community-based services for adults with developmental disabilities has pressed the state to work through the backlog and identify all individuals aged 14 to 21 who might qualify for services after high school. 

One mother, Carla Russo, said her son left school in the 20013-2014 school year and still does not have adult services. 

Iraida Williams, an employee of the Sherlock Center on Disabilities at Rhode Island College, asked whether the application materials would be available in Spanish. Williams has appeared at several public forums on developmental disability services since April 2015, to ask the state to hire a Spanish-speaking social worker or interpreter who could field questions from non English-speaking families.

“That’s the type of feedback that we need,” Gosselin said.

tracey cunningham

tracey cunningham

Tracey Cunningham, Chief Employment Specialist at the Division of Disabilities, said 23 service providers have applied for a supported employment incentive program that is gearing up as a result of the consent decree.

Nearly every one of the 23 providers has talked about taking on new clients in the process, Cunningham said, although she didn't expect the program to begin operations until January.

If that many agencies do expand, it would be a significant shift from a system that has been in a holding pattern because of a shortage of funding. 

Cunningham said the Division of Disabilities also wants to hear from families who organize their own supports and might want to purchase supported employment services.

One mother, Mary Beth Cournoyer, said parents, who themselves have jobs, need to cover a certain number of hours of care for their sons and daughters and can’t afford to divert much, if any, funding to job development. 

Cunningham said that “we are looking” at the possibility of providing additional funding for supported employment services rather than requiring individuals to stretch their budgets.

Gosselin, meanwhile, said that state officials will be working with consultants from the National Association of State Directors of Developmental Disabilities Services for the next six months to try to come up with better ways to serve individuals and families and at the same time comply with new Medicaid regulations affecting individuals with developmental disabilities.

All photos by Anne Peters