Racism Compounds Stresses of COVID-19, Say RI DD Community Voices

Iraida Williams

By Gina Macris

(This article was updated June 9 )

A Rhode Island man with developmental disabilities, stuck at home since the start of the COVID-19 pandemic, is anxious to get back to his regular activities but also is “afraid to take out the trash because he’s black,’’ his mother told a virtual crowd of about 170 people June 5.

Iraida Williams, the man’s mother, spoke during a Zoom forum co-sponsored by the state Executive Office of Health and Human Services (EOHHS) and the Rhode Island Parent Information Network to discuss the hopes and fears of those involved with the developmental disability services. 

Marti Rosenberg

Marti Rosenberg, the moderator or the forum, replied that “just this morning,  EOHHS  has been grappling with these concerns.”

Rosenberg, director of Policy, Planning and Research at EOHHS, said the leadership wants to make sure that “EOHHS agencies are specifically having those difficult conversations.

 “We need to make sure we have an absolutely specific answer for your son,” she told Williams.

Williams said, “I look forward to hearing back from somebody.”

Until now, quarterly community forums on developmental disabilities have been run by the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

But in choosing Rosenberg to moderate Friday’s event, EOHHS signaled a desire to bring the particular concerns of those facing intellectual and developmental challenges to the highest levels of the executive branch of state government.

On June 9, a BHDDH spokesman offered additional context, saying that EOHHS has been helping its member agencies with planning throughout the COVID crisis. Rosenberg had facilitated a number of reopening planning conversations with providers and other community members in partnership with BHDDH and DCYF, and the June 5 Zoom meeting was another in that series.

The meeting was almost entirely given over to participants and their ideas for re-opening regular services. But echoes of ongoing protests against racism in Providence and across the nation were never far from the surface.

Kelly Donovan

Kelly Donovan, who receives state-funded services and is a vocal advocate for herself and her peers, said “people are either antsy to resume their lives or afraid of going out.” In the chat box that accompanied the audio and video of the Zoom meeting, she said she herself is “worried about getting sick and equally worried about the United States turning into a dictatorship.”

Ken Renault of the advocacy group RI FORCE said he had concerns about the neglect or abuse of people with disabilities because of the stresses of the last few months.

Rosenberg said group home residents of color and workers of color have been experiencing even more stresses because of the massive attention to police brutality that has been the focus of widespread protests organized on the heels of the pandemic lockdown.

The COVID_19 pandemic has highlighted the difference between the haves and the have-nots and, and it’s time to recognize the institutional racism in the dividing line between them, said Kevin Nerney, executive director of the Rhode Island Developmental Disabilities Council.

“Yes,” wrote Donovan in the chat box that accompanied the video. “Institutionalized racism is a problem. It is rampant!”

Separately, Nerney and the leaders of Disability Rights Rhode Island and the Sherlock Center on Disabilities at Rhode Island College released a statement decrying the death of George Floyd in police custody in Minneapolis May 25, calling it murder.

“The RI DD Network stands on the side of those who are protesting another needless death, who reject hate, and who demand justice. We are committed to effectuating full inclusion in society and working for the civil and human rights of Rhode Islanders with disabilities of all races, cultural backgrounds and ethnicities,” the statement said. It was issued by Morna Murray of DRRI and Amy Grattan of the Sherlock Center, in addition to Nerney.

Kevin Nerney

During the meeting, Nerney said people with resources have weathered the statewide lockdown with few problems, but the have-nots have struggled.

COVID-19 can be a “springboard for systems change going forward,” Nerney said.

Tina Spears, executive director of the Community Provider Network of Rhode Island, asked what day services might look like as the state re-opens.

“People won’t be able to congregate in the same ways they did before the pandemic hit,” Spears said. It will be “challenging for all of us. How can we administratively and financially do this?”

Thirty percent of daytime services occur in group activities in day centers, according to the independent federal court monitor overseeing the state’s efforts to integrate adults with developmental disabilities in their communities. The monitor, A. Anthony Antosh, has asked that center-based care be eliminated when daytime services resume on a broad scale.

That move would inherently increase costs for providing services because supporting people in the community individually or in small groups is more labor-intensive than overseeing them all in one facility.

(Some agencies are able to provide limited one-on-one or small group services in the community during the pandemic, depending on individual circomstances.)

Nerney said that in an improved system of services, the consumer “has to have full control of planning, evaluation and budget, with assistance from trusted people.”

And the system must move away from congregate care while still giving people a full array of supports, he said.

That last comment sparked push-back from some parents, who said there will always be a need for group homes.

Kevin Savage, the director of the Division of Developmental Disabilities, addressed the issue:

Kevin Savage

“If we say we need congregate care, we can’t imagine providing services another way, in-home or living independently,” he said.

“The ultimate goal is people making their own choices,” he said. While the state closed its institution for people with developmental disabilities more than 20 years ago, if people are living in group homes with others not of their own choice, the de-institutionalization is not complete, Savage said.

Since 1994, when the Ladd School closed,  Rhode Island has supported relatively few housing options for adults with developmental disabilities. And housing is a primary concern, particularly for aging parents.

Savage did not address the cost of safe and supportive alternatives to group homes. For example, staffing an apartment with two or three residents 24 hours a day is inherently more costly than providing that coverage in a group home setting with four to eight residents.

Claire Rosenbaum, coordinator of adult supports at the Sherlock Center, said during the Zoom meeting that many people with intellectual or developmental disabilities may experience some depression as a result of the continuing isolation and may need mental health supports built into their services.

Other comments touched on a need to enable adults with developmental disabilities to have easy access to technology. Rory Carmody of AccessPoint RI and Casey Gartland of Perspectives explained how they used remote audio and video and other hi-tech capabilities to continue to place and support some clients in jobs during the pandemic and to conduct other activities.

John Susa, a parent and long-time advocate, said the Division of Developmental Disabilities has relaxed “a lot of unnecessary rules” during the pandemic. He said he would like the state to ”keep as many of those relaxations in place” as possible.

Carolyn Maxwell, who directs her daughter’s services, said she is particularly pleased about a rule change that allows her to receive compensation for the work she does with her daughter, Emily.

Maxwell, a teacher, said at the previous community forum in March that she was never able to return to the classroom after Emily was born 27 years ago. At the same time, she has had difficulty finding paid staff to work with her.

Maxwell has helped Emily start an online business called “Love Letters By Emily” that features handmade note cards and art photography incorporating American Sign Language, which Emily uses in daily life.

Speaking via Zoom last Friday, Maxwell said that being compensated as Emily’s caregiver has been a “huge help to us.” She wants the rule change to become permanent.

Savage, the state’s developmental disabilities director, said in mid-May that the relaxed rules on hiring legal guardians and other family members would remain in effect. Savage made the comment during a federal court hearing in mid-May on the way adults with developmental disabilities have fared during the pandemic, in conjunction with a 2014 consent decree that gives the court jurisdiction over state-funded daytime services.

Addressing procedures for re-opening developmental disability services, state officials said they anticipated guidelines for ending the lockdown at group homes to be issued later in the day on June 5. The guidelines were issued June 6. To read them, click here.

Service providers are expected to use the guidelines to develop a plan for re-opening group homes to family visits and other normal comings and goings, said Rosenbaum, the adult supports coordinator at the Sherlock Center. Plans must get approval from the BHDDH before they are implemented. (An earlier version of this article incorrectly said approval must come from the Department of Health.)

Rosenberg said the first set of guidelines will apply only to group homes. A separate second set of guidelines will be issued for day services, she said.

The resumption of day services would follow the same sequence, with the issuance of guidelines for providers to draft plans specific to their agencies.

Photos of themselves courtesy of Iraida Williams and Marti Rosenberg. All other photos by Anne Peters.

Public Slams RI DD Funding Constraints

By Gina Macris

Funding for Rhode Islanders with developmental disabilities works against the individualized care that is at the core of the state’s vision for social services.

That was the assessment from families and developmental disability professionals who responded to an outside consultant’s call for public comment Nov. 5 about the rates and rate structure governing Rhode Island’s privately-run system of care.

Rick Jacobsen * All Photos By Anne Peters

Rick Jacobsen, a representative of the New England States Consortium Systems Organization (NESCSO), hosted an open-ended conversation with an audience of about 40 people during a public forum at the Barrington Public Library sponsored by the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH).

There is wide concern among families that “in many cases the funding doesn’t seem to be reflecting the support needs” of the individuals in question, said Claire Rosenbaum, who has a daughter with developmental disabilities and also works as Coordinator of Adult Services at the Sherlock Center on Disabilities at Rhode Island College.

Claire Rosenbaum

Rosenbaum said Individuals with varying needs seem to be assigned the same middle-of-the-road funding, according to what she has heard anecdotally in her position at the Sherlock Center.

Much of the discussion focused on the fee-for-service reimbursement system called Project Sustainability that the state implemented in 2011. The state uses a highly scripted interview process, called the Supports Intensity Scale (SIS) to determine the support needs of each adult approved for developmental disability services. Then a closely held algorithm is applied to the SIS score to come up with one of five funding levels for each person.

The core issue is “how you get from the (assessment) score to the level of funding,” said Cliff Cabral, vice president of Seven Hills Rhode Island, a service provider. That process is a “complete mystery,” he said.

Cliff Cabral

He pointed out that the developer of the assessment, the American Association on Intellectual and Developmental Disabilities, did not intend it to be used as a funding tool.

And Cabral noted that the U.S. Department of Justice (DOJ) has criticized the seeming conflict in having the same state agency both performing the SIS assessment and controlling funding for individuals’ services.

“The need to keep consumers’ resource allocations within budget may influence staff to administer the SIS in a way that reaches the pre-determined budgetary result,” the DOJ said in findings that led to a 2014 consent decree with the state to reform disabilities services.

BHDDH is having a series of community conversations about outsourcing individual service planning and case management functions to a third party to comply with federal conflict-of-interest rules, but some who have attended these sessions say they understand that the parameters of the discussion do not include an outside entity taking on the SIS assessment.

Asked for comment after the forum, BHDDH has issued a statement which said that the discussion around the third-party Health Home “has included an expressed interest in a fire wall between assessment and funding. In these discussions, which are informing the case management redesign, BHDDH has agreed to consider future assessment responsibility.”

If the assessment were put in the hands of a third-party, it would relieve the tension, said Mary Beth Cournoyer, who has a son with developmental disabilities.

In Novemeber, 2016, the SIS was updated and the interviewers were retrained. But at the Barrington forum, Claire Rosenbaum said the re-cast “SIS-A” is not very different than the old one. And parents, including Dorie Carder, whose 20 year-old son has developmental disabilities and a medical condition, reported that interviewers are still argumentative, challenging their perceptions of their children and trying to pull the answers to the questions in one direction or another.

Another problem cited at the forum involved appeals by familes and providers who disagree with the funding resulting from the SIS. Rosenbaum said the appeals require a “ton of staff time.” And she said they must be filed annually or every three months, depending on the situation.

Sue Joinson

Sue Joinson agreed, pointing out that the appeals also cost BHDDH social workers extensive time. Joinson, whose daughter has extensive medical needs, also has worked on appeals in her job as director of nursing at the Corliss Institute, a developmental disabilities service provider.

Dorie Carder, the parent with the 20-year-old son, said the first SIS she had was a “horrible experience.”

Dorie Carder

When she appealed the results, she faced off alone against a BHDDH lawyer and a social work supervisor, who challenged her on the medical details of her son’s case. Then, Carder said, she had to wait a year to get the results of the appeal. Still dissatisfied, she went to the Director of Developmental Disabilities, Kerri Zanchi, who ordered a new SIS interview that resulted in a better funding level.

Before the SIS was adopted in 2011, the state accepted a questionnaire called a personal capacity index, combined with a “situational assessment” of the individual in various settings, to come up with an overall evaluation of need, said Joanne Malise, executive director of Living Innovations, which specializes in supporting adults with developmental disabilities in shared living arrangements in private homes.

Connie and John Susa

At one point, John Susa, a parent and long-time advocate, turned the tables on Jacobsen, the consultant, and asked Jacobsen if he thought Rhode Island has a system where “the money follows the person”, meaning that funding is tailored to meet individual needs.

Jacobsen replied, “There are a lot of constraints that intervene with that” personalized funding.

The audience provided examples of the constraints:

• Agencies must bill for services in 15-minute increments for each person during the day and cannot bill for time if a client is absent for any reason, even though the agency must maintain the same level of staffing

• Transportation funding is limited to one round trip daily, not conducive to community integration

• Staffing for community-based activities is linked to specific ratios that depend on individuals’ funding levels, not to the desired destination of any one person.

• For families who direct a loved one’s individual program, money is forfeited if it is not used within the three-month period for which it is allocated, for whatever reason, including staff shortages or hospitalizations.

Joinson recounted how, on the one hand, her medically-fragile daughter’s social service allocation was unused while she was hospitalized, and on the other hand, her social worker pushed back against her attempts to get a residential placement for her daughter, saying that there wasn’t enough money and others had more pressing needs.

“He tried to make me feel guilty,” Joinson said of the social worker, but a residential placement is what her daughter wants. BHDDH is trying to limit high-cost group home placements and instead wants to increase the number of shared living arrangements in private homes, lower-cost options which families and providers alike say often do not work for those with extensive needs.

Meanwhile, Cabral, of Seven Hills, noted that most adults with developmental disabilities do not have families to advocate for them, leaving the agency to act as the family.

The agency cannot turn down the individuals the state refers for residential placement, but these referrals often need a high level of behavioral support that make them a bad fit with those already living in the agency’s group homes, Cabral said.

NESCSO’s consultants have spent months reaching out to service providers and Jacobsen said they still plan to do some site visits.

But Cournoyer urged Jacobsen and other NESCSO representatives do a “deeper dive” into specifics from the family perspective.

Jacobsen was asked what impact NESCSO’s recommendations would have on the system. He said NESCSO was hired to give BHDDH a range of options, from small changes to blowing up the entire system and putting a new one in place. But in the end, the “choice is not mine,” he said. Instead, BHDDH officials have reserved the right to decide which options to pursue - or not.

Whether NESCSO’s recommendations ultimately result in real improvements will depend on the advocacy of the community, he said.

Jacobsen said he spent 20 years working for Medicaid in Rhode Island and no one ever asked him “how to spend more money.” Quite the opposite, he said.

If BHDDH asks for more money, Jacobsen said, someone “beats them over the head.”

BHDDH was not represented during the discussion, which was recorded and posted on the Facebook page of RI FORCE, a family advocacy group. Asked to comment on the recording, the department provided this context:

“BHDDH has invested sizable resources into a rate review process to provide the needed analytics and options to support system transformation. The department is committed to quality, safety and access through its vision of individualized, person centered, self-determined and community-based supports.

We recognize that this vision requires system transformation. While the system has certainly made progress, the underlying reimbursement system remains grounded in past practices. The purpose of this rate review is to assess the costs of services and explore other models for reimbursement. This work must also extend to understanding the system as a whole for consideration of both structural efficiencies and complexities that could hinder or promote transformation. This work is in progress and this is why feedback and input from the community remains vital and welcomed.

While the department has demonstrated its responsiveness through modifications and investments within the current structure, we look forward to the completed analytics and options that NESCSO will deliver to support both near term and long-term changes.”

RI Parents: System Of Care Fails To Address Supervision of Adults With DD In Hospital Setting

Jane Sroka * all photos by anne peters

By Gina Macris

Access. Quality. Safety.

Those are the three words chosen by officials of the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) to sum up their overarching goals in serving adults facing intellectual and developmental challenges.

But at a public forum in Warwick Feb. 5, Jane Sroka, the mother of a man with intensive special needs, said the reality falls far short of those three goals when adults with special communications and behavioral needs are hospitalized.

The Medicaid dollars to which Sroka’s son is entitled through Home and Community-Based Services funded through BHDDH stop at the hospital’s door.

“My son needs 24/7 eyes-on supervision at all times. It’s huge. It’s life and death. That’s what it is,” she said.

In the hospital, Sroka said, “I was with him 24/7. He was awake 24/7. I was awake, 24/7. That was tough. It’s grueling on everybody.”

You’re talking about putting safety first? This is safety first,” Sroka said.

Not providing that round-the-clock supervision, in her son’s case, would have been dangerous, she said.

It’s not that the nurses don’t care, she said, but “if I wasn’t there, they wouldn’t have a clue about what to do or how to do it or when to do it, or whatever. It’s dangerous. And it has to change,” she said. She said she knows she is not alone.

Gail Peet had a similar story. She said her daughter, 47, who is non-verbal, became extremely agitated when a feeding tube was inserted.

After her daughter was transferred to a nursing home, Peet said, she asked the staff to put a binding around the feeding tube to prevent her daughter from ripping it out.

The nursing home refused, on the grounds that the binding would constitute a “restraint,” Peet explained after the forum. The next morning, the staff discovered that Peet’s daughter had indeed ripped out the tube, which had to be re-inserted, causing her the additional pain of a second procedure.

In neither Peet’s nor Sroka’s case did there appear to be a plan for in-hospital or discharge care that addressed complications that could arise from individuals’ particular challenges as persons with developmental disabilities.

Rebecca Beaton

And Rebecca Beaton, who uses a wheelchair and must make a great effort to shape each word, said she, too, needs 24-hour care if she goes to the hospital because she has a speech problem and not everyone understands her. A support person seated next to her at the forum repeated her words for clarity.

John Susa, former chairman of the Rhode Island Developmental Disabilities Council and the father of a man with extensive needs, said there used to be a pool of state funds — outside the federal-state Medicaid structure — that was once used only in emergencies involving adults with developmental disabilities. He suggested that officials re-visit that idea.

Kerri Zanchi, Director of the Division of Developmental Disabilities (DDD),, stood at the podium of a meeting room in the Warwick Public Library, taking notes.

Kerri Zanchi

Medicaid separates Home and Community Based Services (HCBS) from hospital services to avoid duplication, Zanchi explained.

“But I hear you,” she told Sroka and Peet, that the situations they described were not about duplicate services.

Zanchi raised the possibility that an upcoming initiative, the creation of a “Health Home,” might open an opportunity to provide the kinds of supports that Sroka and Peet needed in the hospital and nursing home. A Health Home is a Medicaid-spawned concept for the management of services, not a bricks and mortar facility.

“It is so important for the individuals we love and support to have that consistency and continuity of care,” she said.

Earlier in the forum, Zanchi had explained the Health Home as an entity that would manage a program of individualized services around the unique needs and preferences of a particular person served by DDD.

FROM OLMSTEAD TO HEALTH HOMES

Medicaid created the Health Home option to separate the design and management of services from the funding and delivery of services. The goal is to avoid any conflict of interest that might compromise the quality of care.

The states must provide so-called “conflict-free case management” by 2022 to comply with the Medicaid Home and Community Based Services Final Rule, issued in 2014 to align Medicaid with the integration mandate of the Americans With Disabilities Act.

According to the 1999 Olmstead decision of the U.S. Supreme Court, the integration mandate says individuals with disabilities must have access to the supports they need to live regular lives in the least restrictive environment that is therapeutically appropriate – and that environment is presumed to be the community.

In line with Olmstead, as well as a 2014 consent decree in which Rhode Island has agreed to desegregate its daytime services for adults with developmental disabilities, state officials and the developmental disability community have embraced the idea of “person-centered planning,” which puts the needs and preferences of individuals at the core of any service plan.

But at the forum, Mary Beth Cournoyer, the mother of an adult son with developmental disabilities and a member of the Employment First Task Force, suggested “whole life” planning as a more encompassing term.

“How do we build lives? It’s 24 hours a day, seven days a week,” she said. The Employment First Task Force to which she belongs was created by the consent decree to serve as a bridge between the community and state government.

Zanchi said state officials will meet with their community partners, including families and providers, to ask them to help draft the design for a Health Home for adults with developmental disabilities before the application is submitted to the federal Medicaid program.

She said DDD hopes to have a Health Home up and running in about 12 months.

NEW WORKPLACE LAW AFFECTING SOME DD SERVICES

The forum also brought to light apparently unintended consequences of the Healthy and Safe Families and Workplaces Act, which went into effect last July 1, guaranteeing all workers get time off to go to doctors’ appointments and attend to other important personal and family needs. Companies with 17 or more employees are required to give paid leave.

Sue Babin of the Rhode Island Developmental Disabilities Council said that those who direct services for themselves or a loved one are receiving conflicting advice from fiscal intermediaries about whether the law applies to support staff for adults with developmental disabilities.

And some individuals who are advised the law does apply and are granting time off to their support staff are having problems finding substitute workers, Babin said.

Zanchi suggested a separate meeting with families that organize and direct their own services to discuss the impact of the new workplace law and any other inconsistent advisories they may be receiving from fiscal intermediaries, who control the individualized budgets the state authorizes to be spent on services for particular individuals.

RATE REVIEW GEARING UP

In an overview of changes at DDD, Zanchi announced that the division is about to embark on a review of its fee-for-service rate model for reimbursing private agencies that provide most of the developmental disability supports in state.

To that end, BHDDH has selected an outside consultant for the remainder of the current fiscal year and the new budget cycle beginning July 1.

Zanchi declined to name the contractor until a purchase order for services has been signed by the state purchasing office. She did say, however, that the consultant was not Burns & Associates, the Arizona-based company that helped a previous administration devise Project Sustainability That is the name for the existing fee-for-service model that doles out payments for daytime services in 15-minute increments that must be documented by each worker for each client served.

Zanchi said $500,000 for the consultant was budgeted in the current fiscal year, and an equal amount is in the governor’s proposal for the next budget.

To expedite the rate review, the contractor was selected as a “sole source” provider, without the months-long process or issuing a request for proposals and reviewing bids, Zanchi said.

NEW YOUTH AND TRANSITION ADMINISTRATOR

Zanchi announced that Susan Hayward, a veteran social casework supervisor, has been named to the new position of Youth and Transition Administrator, to coordinate a smooth shift for high school special education students moving into adult services.

Employment opportunities and other transitional servicesfor teenagers and young adults are a prime concern of the independent court monitor overseeing implementation of the 2014 consent decree, as well as an earlier interim settlement agreement affecting only youth and adults in Providence.

The 2013 interim settlement agreement addressed violations of the integration mandate of the ADA that involved a special education program at the Birch Academy of Mount Pleasant High School being used as a feeder program for a former sheltered workshop in North Providence called Training Through Placement. The agreement is set to expire July 1, 2020, at the discretion of the U.S. District Court.

BHDDH officials presented a PowerPoint of information covered at the public forum. To view it, click here.

The advocacy group RI FORCE (Rhode Island Families Organized for Reform, Change, and Empowerment) recorded the public forum and has posted the video, in three parts, on its Facebook page. To connect to the video, click here.