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Continuing drop in number of residents threatens continued existence of DDS state-run facilities

January 26, 2023 8 comments

New data that COFAR has received from the Department of Developmental Services (DDS) shows the number of residents or the census at both the Wrentham Developmental Center and Hogan Regional Center continued to drop from Fiscal Years 2019 through 2022.

The data, which was provided by DDS last week under a Public Records Law request, shows that as of Fiscal Year 2022, the census at the Wrentham Center was 182, down from a high of 323 in Fiscal 2013 — a 44% drop.  The census at Hogan was down to 95 in 2022, from a high of 159 in 2011. That is a drop of 40%.

Previous data from DDS showed that the total census in the state-operated group homes declined from a high of 1,206 in Fiscal 2015, to 1,097 in 2021 — a 9% drop.

Meanwhile, the census in the state’s much larger network of privatized group homes has continued to climb, rising from 6,677 to 8,290 between 2008 and 2021 — a 24% increase. (See the graphs below.)

Hogan now has well under 100 residents remaining, and Wrentham is well under 200. Since August 2021, DDS has closed seven state-operated group homes and subsequently reopened one.

But more troubling than those closures is the fact that DDS does not inform individuals and families seeking residential placements that these state-run facilities even exist. Last fall, we wrote about a rare admission to the Wrentham Center, but that appears to have been the exception. We have heard from several people who have been unsuccessful in seeking placements for their loved ones in either ICFs or state-operated group homes.

That policy decision by DDS to discourage or block new admissions guarantees that the number of residents in state-run residential care will continue to drop, and that the ICF’s, in particular, will eventually be closed.

 

Source: DDS

DDS says it has no records on plans to close Wrentham or Hogan

Despite the continuing downward trend in the census at Wrentham and Hogan, DDS said in response last week to our Public Records request that they have no records concerning projections or plans to close those facilities. We have appealed that response to the state supervisor of public records, arguing that the Department did not indicate that it had done a search for such internal plans or projections.

Given the declining census at both Hogan and Wrentham, we believe it is unlikely that there are no departmental emails or other records at least discussing the possibility that these facilities will eventually close.

ICFs and state-operated group homes are vital backstops for care

State-run residential facilities are vital to the fabric of care in the DDS system. As Olmstead v. L.C., the landmark 1999 U.S. Supreme Court decision, recognized, there is a segment of the population with I/DD that cannot benefit from and does not desire community-based care. ICFs, in particular, must meet stringent federal standards for care that make them uniquely appropriate settings for persons with the most profound levels of disability and medical issues.

The ever-expanding network of group homes in Massachusetts that are run by corporate providers that contract with DDS have become bottom-line operations that meet minimal standards for direct-care pay and training. Abuse and neglect are rampant problems in the group home system. Meanwhile, the executives running these provider organizations have seen their salaries skyrocket in recent years.

As funding for the ICFs and state-operated group homes has declined or remained stagnant respectively over the past decade, funding for the corporate-run group home system has grown steadily to over $1.4 billion today.

Allowing the state-run network of care in Massachusetts to wither and die through underfunding and attrition will lead to a catastrophic decline in the level of care and services for some of our most vulnerable residents.

Seven years after the closure of his sheltered workshop, Mark Garrity is still waiting for something to replace it

January 12, 2023 4 comments

It has always been his work that has motivated Mark Garrity, his sister Patty says.

When he participated in his sheltered workshop, Mark was productive and social. He derived meaning from the tasks he was given, and he had fun with his friends.

Mark, 52, who has an intellectual disability, doesn’t need or care about being paid a minimum wage for it, Patty says. What is important to him is completing an assigned task.

“If Mark sees a pen without a cap, he’ll put it on with a twist and be proud of it,” Patty says.

But since 2016, when all remaining sheltered workshops were closed in Massachusetts, Mark has faced a void as far as work is concerned.

Mark Garrity (lower right) at a fundraiser for Road to Responsibility with his mother Helen (lower left). In upper row is Mark’s sister Marybeth Garrity (left), his sister Patty Garrity, and John Gregory, a staff member at the time in Mark’s group home.

Mark’s community-based day program is run by the Road to Responsibility (RTR), a provider to the Department of Developmental Services (DDS). The day program offers a cooking class in the kitchen, but that doesn’t interest Mark.

“He just stays in one room where he eats lunch,” Patty says. “When they took away his workshop, they took away his meaning. He’s not like you and me.”

Can’t function in the community

In his sheltered workshop, Mark packaged and assembled things such as car door locks. He took pride in that work.

The purpose in closing the workshops, according to the successive administrations of then Governors Deval Patrick and Charlie Baker, was to place people with intellectual and developmental disabilities in mainstream or integrated work settings that pay at least minimum wage. But Patty says that approach doesn’t work for Mark.

“He can’t produce at the minimum wage level,” she said. And now with the minimum wage in Massachusetts having risen to $15 an hour, she says, it would be even more difficult to find a suitable job for Mark in the community.

Moreover, if Mark were to go off-site and into the community to work, he would need 1-to-1 staffing assistance, Patty said. His day program doesn’t have sufficient staffing for that.

A few years ago, Patty proposed to Mark’s day program staff that the clients be given objects to pack into gift bags that the clients could then deliver to homeless shelters. She said she was told, though, that the program didn’t have the funds to purchase the gift bag items.

“Now his work is long gone,” she said, “and we continue to wait, and nothing is showing up.”

Federal and state lawmakers need to be informed about the value of work activities

We need to let our state legislators and members of Congress know about the lack of meaningful work activities in day programs, which is not unique to Mark’s program.

In the just-ended session of Congress, every member of the Massachusetts delegation, with the exception of U.S. Rep. Richard Neal, co-sponsored legislation (H.R. 603 and S.53), which would eliminate remaining sheltered workshops throughout the country and require that all clients be paid minimum wages in “integrated” work settings. Fortunately, the bills were not approved in that session, but the legislation will no doubt be reintroduced.

You can find your members of Congress here and state legislators here. Please let them know that if they support the elimination of sheltered workshops, they need to find ways to replace the work the shelters provided, particularly for those persons who can’t function in the community.

Sheltered workshop closures left thousands with little to do

All sheltered workshop programs were closed in Massachusetts as of 2016 after the federal Department of Justice had stated two years earlier that developmentally disabled people should work in integrated employment settings in which a majority of the workers are not disabled.

But while sheltered workshops have been deemed “segregated” settings because they are offered solely to groups of developmentally disabled persons, many clients and their families and guardians argued that the programs provided fulfilling, skill-building activities and did not preclude community integration.

Ever since the closures of the workshops, thousands of DDS clients have been transferred to day programs with little or nothing to replace the work opportunities they previously had.

For a potentially significant number of DDS clients such as Mark, mainstream work settings have never been a viable option. Those persons aren’t able to function in those settings or don’t desire to do so.

Neurologist said sheltered workshop was important for Mark

While Mark has had an intellectual disability since birth, his cognitive functioning was further impaired when he suffered a traumatic brain injury after being hit by a car in 1995. In a letter written before Mark’s sheltered workshop program was ended, his neurologist, Dr. Douglas Katz, a member of the Department of Neurology at Boston Medical Center, stated in that Mark began a long course of rehabilitation after the accident, and that his sheltered workshop activities were an important part of that rehabilitation effort.

Katz added that, “I understand this (sheltered workshop program is …likely to close… I think this would be a big loss for my patient Mark. I would support efforts to maintain this structured workshop for Mark and others that benefit from this service.”

Day program found a partial solution

In some cases, day programs have tried to find ad hoc solutions to the lack of available work activities. After COFAR contacted DDS about Mark’s situation in early 2017, RTR staff found a paper shredding activity for Mark to do at the day program site. The activity received verbal approval from the DDS southeast regional director, who determined that it was in compliance with federal regulations.

The paper shredding seemed at first to be a good solution for Mark. But Patty said that Mark soon sensed a lack of structure and purpose in the activity and became bored with it.

In 2016, we first urged state legislators to recognize that like Mark, not every DDS client is capable of or desires to participate in the mainstream workforce.

In 2019, we asked those lawmakers to support H.88, a bill which would have required that meaningful work activities be provided in DDS community-based day programs. But the language in the bill was subsequently removed by the Children, Families, and Persons with Deisabilities Committee and replaced with language establishing a Permanent Commission on the Status of Persons with Disabilities.

Day program staffing shortages have made problems worse

Day programs around the state are currently struggling with staffing shortages, which have made it even more difficult for them to provide meaningful activities to clients.

Mark’s day program is no exception. Mark, who stayed home from the program during the height of the COVID pandemic in 2020, is now back attending the program only one day per week due to the insufficient staffing.

Mark is still doing the paper shredding activity there, Patty says. But for most of the four-hours he spends at the day program site, “he’s mostly a spectator,” she said.

Patty herself takes Mark out of his group home on Mondays for coffee and errands. On Tuesdays and Thursdays, she takes him to the YMCA where he works with a personal trainer. On Wednesdays, after his day program ends, Patty takes him to a weekly bowling program.  And on Fridays, Saturdays, and Sundays, she takes him out for coffee and to visit friends.

“As far as the community goes, Mark has a very balanced life,” she said. “It’s his work piece that is missing.”

Patty is planning to introduce Mark to her local legislators. She thinks that may help them to understand “what Mark can and cannot do.”

“I sometimes feel defeated,” Patty said, “I but will never give up the fight for Mark. “He’s capable of so much more, but the system needs to respond.”

Update: Problematic SDM bill dies at end of legislative session

January 5, 2023 4 comments

A problematic bill that would have authorized Supported Decision Making (SDM) as a substitute for guardianships of persons with intellectual and developmental disabilities (I/DD), died at the end of the just-completed two-year session of the state Legislature on Tuesday.

The bill (S. 3132) had passed the Senate in November and was a step away from final passage in the House. However, the House Ways and Means Committee declined to advance it to a remaining “informal” session of the House where it could have been approved on a voice vote, without debate.

As we noted in our previous post, the bill lacked provisions to protect the rights of persons with I/DD and their families and guardians. Last month, we urged the staff of the Ways and Means Committee not to send the bill to the House for final passage.

The bill, which would replace guardianship of individuals with informal teams of “supporters,” will most likely be reintroduced in the new two-year legislative session, which began yesterday (Wednesday). Unfortunately, our guess is that the proponents of SDM will file the same piece of legislation that they have filed several times previously without including our suggestions to improve the bill.

Under the bill, SDM “supporters” would help individuals with I/DD make key life decisions, including decisions about their care and finances. Most people with I/DD currently have guardians, most of whom are family members of those individuals. But SDM proponents maintain that guardianship, even when guardians are family members, unduly restricts an individual’s right to make those decisions.

In our view, however, a key piece missing from the SDM legislation so far has been a standard for the level of I/DD under which an individual cannot reasonably be considered to be capable of making decisions even with “support” from clinicians, paid caregivers, and other SDM team members.

The SDM legislation assigns the role of the “decision maker” to the person with I/DD. The SDM bills submitted each legislative term thus far have drawn no distinction between people with the lowest cognitive levels and those with the highest functional levels of I/DD. As a result, we think the legislation presents a potential for financial exploitation of persons with I/DD.

In that regard, we pointed out to the committee that the bill needed a provision prohibiting providers from being involved as SDM “supporters” in helping individuals make “decisions” about services the providers offer.

As we noted, we think SDM is a concept that needs to go back to the drawing board. We would be happy to work this time around with legislators and SDM supporters in drafting a bill that contains the safeguards we’ve noted here and in our previous post.

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