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Posts Tagged ‘developmental disabilities’

Staffing shortages and low pay affecting care in DDS group homes

July 19, 2021 6 comments

As the Department of Developmental Services (DDS) system in Massachusetts emerges from the COVID crisis, a number of systemic problems are lingering, including reports of staffing shortages in group homes.

The staffing shortages may not be directly due to the pandemic, but the pandemic may have brought matters to a head.

Staffing shortages have long been a potential result of the low pay provided to direct care workers in the DDS system compared with high salaries provided to executives managing the nonprofits operating most of the group homes.

Even with a $4.2 billion surplus in state budget revenues projected for the current fiscal year, there appears to be no sign of urgency on Beacon Hill to address the direct care wage problem. Legislation (H.4171) that would have boosted minimum direct care wages in the DDS system to $20 per hour died at the end of the previous legislative session last December, and apparently hasn’t been revived.

We sent an email query on July 13 to state Health and Human Services Secretary Marylou Sudders and DDS Commissioner Jane Ryder, seeking confirmation of the staffing shortages and reasons for them. We sent a similar query to the Legislature’s Children, Families, and Persons with Disabilities Committee.

In our emails, we asked whether there are legislative efforts underway to boost direct care pay in the DDS system in order to recruit more caregivers and prevent others from leaving the system.

Neither Sudders nor Ryder has responded to our query.

A staff member of the Children and Families Committee did get back to us last week, saying a bill has been proposed for the second year in a row that would gradually raise the pay of direct care workers employed by DDS providers to the level earned by similar workers employed by the state.

Unlike last session’s bill, which would have raised direct care pay to $20 per hour, no actual hourly payment amount is specified in this year’s bill, H.237. The measure was referred to the Children and Families Committee on March 29.  A “tentative” vote on the bill isn’t scheduled by the Committee until this coming fall.

In response to a separate query we sent earlier this month to our membership, a number of family members maintained that staffing shortages exist and have caused problems in their loved ones’ residences. One parent said a DDS regional director had confirmed to her that “there is a staff shortage statewide and they are working to recruit people.”

In one case, a DDS official emailed a parent of a state-operated group home resident, saying DDS was “in touch with (the group home management) …to ensure proper staffing ratios are being met at all times.”

But a number of family members said they did not believe staffing has lately been adequate in the residences. One parent said her son needs two staff to assist him. She said, however, that there were only two staff available per shift in the entire residence, whereas there used to be five staff per shift. The parent termed the staffing situation “potentially dangerous.”

Another parent said several staff in her son’s residence were either on vacation, had resigned, or were in training elsewhere. She said the situation resulted in a recent incident in which a resident of the home left the residence unnoticed and was eventually found outside and brought back by staff.

Affecting quality of care

The parent cited above added that the shortage of staff in the residence has been accompanied by a shortage of hygienic supplies such as disposable wipes and body wash. “The lack of good personal hygiene is neglect,” the parent said.

Use of temporary employment agencies

Two family members said the providers running the group homes were using temporary staffing agencies to fill full-time positions. “They come into the house,” said one parent, “turn on the TV and sit down.” The parent said the temporary staff are not allowed to drive, so her daughter “is stuck inside the house all day, sometimes day after day, which is contributing to her health issues.”

A parent of a resident in a state-run group home said a number of the group home Occupational Therapy and Physical Therapy staff were also working in provider-run homes in order to supplement the staffing there.

Need for higher pay for direct care workers

A number of parents pointed out the connection between the staffing shortages in the group homes and low pay for direct care workers.

As one parent put it in an email to us, “Since the governor has a $4 billion surplus, maybe he could give DDS money,” specifically to increase group home staff wages.

A state budget fund was created a number of years ago, in part, to boost direct care wages. The problem is that while the fund has generated surplus revenues for many providers in recent years, little of the money has apparently gone to boost direct care pay.

In 2018, Governor Baker did sign legislation to raise the minimum wage of direct care and other workers to $15 an hour; but the minimum wage won’t reach that amount until 2023. In 2017, the Legislature rejected efforts to raise direct care wages to $15 as of that year, and rejected a bid in 2019 and again last year to raise direct care wages to $20 per hour.

EOHHS no longer tracking staff vaccinations

Also possibly due to the staffing shortage, the administration is not only not requiring working staff to be vaccinated for COVID-19, the administration is no longer tracking the number of staff who are vaccinated. EOHHS said it has never tracked the number of staff refusing vaccinations.

In a response to a June 28 Public Records Request we submitted for the latest numbers on residents and staff in the DDS system who have been vaccinated, EOHHS said they stopped tracking that information as of April 23. That was the last time they provided that information to us.

On April 23, EOHHS gave us information from early that month, indicating that about 50% of staff in DDS-funded group homes had been vaccinated, and 75% to 90% of residents in group homes had been vaccinated. So apparently with only half of the staff in the system vaccinated, EOHHS decided to stop tracking it.

Perhaps given the fact that the administration doesn’t require DDS staff to get vaccinated, the administration decided it isn’t necessary to know how many staff have actually done so. That seems to be a risky approach.

It also seems one of the administration’s biggest fears has been that the COVID crisis would lead to staffing shortages. As a result, the administration was slow to require testing of staff for COVID-19, and has declined to require that staff get vaccinated.

Despite that fear, the administration and Legislature apparently don’t seem to want to do the one thing that would go furthest to prevent staffing shortages — that is, ensure that direct-care staff are adequately paid for the difficult and important work they do.

Our July newsletter is available onlne

The July 2021 issue of our newsletter, The COFAR Voice, is now available on our website, with articles reporting that:

  • The Department of Developmental Services (DDS) has decided to finally lift family visitation restrictions in light of declining COVID rates in group homes and other residential facilities.
  • New data show the number of DDS clients entering the mainstream workforce dropped after October 2019.
  • The Legislature has upheld Governor Baker’s proposed cuts in funding for state-run DDS group homes, ICFs, and day programs; but COFAR made progress this past spring in getting Senate sponsors for budget amendments to restore that funding.

We also have an article about the retirement in June of Colleen M. Lutkevich, COFAR’s longtime, volunteer executive director. But not to worry — Colleen will continue to be available to do what she has done for 35 years — advocate on behalf of families and guardians of persons with intellectual and developmental disabilities.

Check out those articles and more in the new newsletter.

As usual, we welcome your thoughts about these issues, and your feedback in the comments section below.

As COVID rates drop, DDS finally lifts restrictions on visiting group homes

July 2, 2021 1 comment

With numbers continuing to drop of residents testing positive for COVID-19 in the Department of Developmental Services (DDS) system, DDS has finally lifted restrictions on visitation, according to an announcement on the Department’s website.

In the announcement, dated June 14, DDS Commissioner Jane Ryder stated that DDS had “asked our residential settings to return to their pre-pandemic visitation policies and practices” with the following exceptions:

  • Continued screening of all visitors for symptoms of illness and COVID-19 infection.
  • Suspended visitation when a resident is isolating due to COVID infection or there is a COVID-19 outbreak at the program.
  • Visitors must wear masks indoors at the home except if fully vaccinated and visiting a fully vaccinated resident in their room. Staff are still required to wear masks in group homes, regardless of vaccination status.
  • Residents who are fully vaccinated may visit with loved ones who are fully vaccinated without maintaining social distancing or wearing masks, if they choose.

The relaxed visitation guidelines hopefully mean the end of the imposition of contradictory and seemingly arbitrary restrictions, in some cases, on visitation by families of loved ones in the DDS system.

Ryder’s statement came just as the most recent COVID testing data published online, on June 15, showed that positive cases have reached new lows in the DDS system.

For the first time since COVID testing data has been kept, there were zero positive cases among residents in provider-run DDS group homes, and less than 5 residents testing positive in state-run group homes. (See graph below for the testing trend for provider-run residents since June 2020.)

Source: EOHHS online data

In the weeks prior to June 15, the number of residents testing positive in the provider-run homes had held steady at close to 30, while the number testing positive in the state-run group homes had held steady at about 10.

It remains to be seen whether the lower positive rates as of June 15 will continue.  The answer to that question will apparently not be known publicly until July 13, when the next results will be published.

As of June 16, the Executive Office of Health and Human Services (EOHHS) indicated on its COVID reporting site that DDS testing data will be published only every four weeks instead of weekly, as had previously been the case during the COVID crisis.

It is still unclear how many staff in provider-run group homes in the DDS system are continuing to test positive for COVID. That information has never been included in the DDS facilities reports.

The latest report as of June 15 shows less than 5 COVID-positive staff in the state-operated group homes, and zero positive staff and zero positive residents in the Wrentham and Hogan developmental centers.

Staff vaccination rates still unclear

COVID vaccination rates among staff and residents in the DDS system are also not published online.

Based on information provided by EOHHS in response to Public Records Requests from COFAR, we last reported that as of April 9, less than 50% of staff in state-operated group homes were fully vaccinated.  In provider-run group homes, only 51% of staff were fully vaccinated as of April 12.

Some 75% and 90% of residents in provider-run and state-run group homes respectively had been vaccinated as of April 12.

We filed a renewed Public Records request on Monday (June 28) with EOHHS for the latest staff and resident vaccination rates. EOHHS stated that a response will be provided by July 13.

As we have previously noted, the relatively low staff vaccination rates as of April may have been keeping COVID present in the DDS system. However, if COVID rates among residents do remain at zero or close to it in the weeks following June 15, it would almost certainly be due to a high vaccination rate among those residents.

Ryder continuing to push vaccinations for residents

In her June 14 message, however, Commissioner Ryder implied that not all DDS clients have been vaccinated. She noted that a “Homebound Vaccination Program” was available across the state to anyone with trouble getting to a vaccination site.  The number is 1-833-983-0485 to schedule an in-home vaccination.

Restarting day programs

Ryder also said DDS was working with providers to return clients to in-person day and employment programs. She said, however, that those programs are currently “struggling” with staff shortages.

We have reported that day programs were also targeted for major cuts in the governor’s Fiscal Year 2022 state budget. The fiscal year began Thursday (July 1), but the budget has not yet been approved by the Legislature.

Ryder did not mention in her message that in January, Governor Baker specified a $25 million, or 11%, cut in the DDS Community Based Day and Work (CBDW) line item. A major cut in the line item could also make it difficult to return clients to in-person day programs.

The House and Senate subsequently added $15 million back to the CBDW line item, noting that the add-back would primarily be for the development of services in response to the COVID pandemic. But even the House and Senate versions would cut the line item by $10 million, or 4.2%, from the previous fiscal year.

We have previously reported that the COVID crisis resulted in a major shift to remote attendance in the CBDW programs via platforms such as Zoom. As of November 2020, 36% of day program clients were attending remotely only, according to DDS data.

As usual, it would be helpful to have more timely information from the administration about the state of the DDS system, particularly regarding COVID vaccination and testing rates for provider staff. The outlook for DDS day programs also remains cloudy as we emerge from the pandemic.

At the same time, the dropping positive COVID rates among DDS group home and facility residents, and the promised return to pre-pandemic visitation policies are very hopeful developments.

A mother’s lonely battle for appropriate care for her son

June 29, 2021 9 comments

Valerie Loveland has felt as though she has had to fight alone to protect her son from indifferent care and even abuse in the Department of Developmental Services (DDS) system.

Her decisions were questioned, she says, not only by the staff in her son’s previous group home in Cotuit, but by DDS officials and even the DDS-paid co-guardian for him. 

At times she has feared that her own co-guardianship of her son might be taken away. (Although she wants her son’s story told here, she requested that his name not be used.)

In addition to other issues she has had to deal with, the state’s response to alleged sexual abuse of her son in March of this year in the group home seems to have been shrouded in secrecy.

Valerie Loveland

Even as co-guardian, she has not been allowed to view the complaint filed in the matter. She has been told only that her son was allegedly sexually abused by a group home staff member, but not what happened.

Tide may have turned

The good news is that in the past few weeks, the tide seems to have turned in her son’s favor.

Although Valerie was not able to get her son into a state-operated group home, as she had hoped, the May Institute did place him earlier this month in a new residence, also in Cotuit. And she said the new group home staff is making an effort to follow her requests to improve her son’s diet, which she said is linked both to his health and his behavior. The staff are also carrying out his occupational therapy plan.

For Valerie, it has all been about introducing common sense to her son’s care. “Maybe we should change what he’s getting to eat,” she said, citing an example. “That might actually save the state money on doctors visits, damage to the residence etc. That’s why I’ve been in their face.” 

But as is so often the case, common sense does not prevail in the DDS system. Valerie’s case demonstrates how family members in the system frequently find themselves pitted against providers, clinicians, probate court judges, and bureaucrats. The family members’ concerns and wishes for their loved ones are too often disregarded or overridden.

Valerie’s son, who is 23, has an intellectual disability, is non-verbal, and needs 24-hour care. He has now been a resident for the past five years in three separate group homes on Cape Cod run by the May Institute.

Valerie said DDS had attempted to remove her as her son’s guardian when he turned 18, but then agreed to the co-guardianship arrangement.  The other co-guardian is an attorney who is paid by DDS and who has other wards as well. 

She said there had been problems in the previous Cotuit-based group home with cleanliness and thefts of her son’s electronic devices that help him communicate. In March, her son was allegedly sexually abused by a staff member of the group home. The incident was apparently reported to the Disabled Persons Protection Commission (DPPC) by another staff member.

Valerie has been told that DPPC is still investigating as are police. Her request to DPPC for a copy of the written complaint in the case was denied because the investigation is still underway. 

Son’s care has taken a financial toll

After the alleged assault, Valerie removed her son from that group home and cared for him at home. He was placed in the new May Institute group home in Cotuit on June 19.

Valerie, who lives in Chatham, estimates that it has cost her thousands of dollars in lost income to care for her son at home and drive him each day to his day program in Mashpee.

Valerie works in grocery delivery and part-time in aromatherapy, and is working for a college degree in alternative medicine. She said the DDS-paid co-guardian has largely been uninvolved in her son’s physical care, but criticized her decision to remove her son from the group home in which he was allegedly abused.

She and her ex-husband were divorced in 2002. She said her ex-husband has been completely uninvolved in her son’s life and hasn’t seen him since her son was about 2 or 3 years old. Valerie cared for her son at home until he was 18.  Her ex-husband owes her child support, she said, but has disappeared. Even private investigators, including one hired by the state Department of Revenue, haven’t been able to find him.

May Institute executives well compensated

Despite her tenuous financial situation, Valerie has had to deal with a system dominated by well-paid corporate executives and powerful state officials. The May Institute’s Fiscal Year 2019 tax filing with the IRS listed a dozen executives of the nonprofit organization as having received more than $100,000 each in salary and other compensation that year.

That list was topped by May Institute President and CEO Lauren Solotar, who received almost $477,000 in total compensation, followed by the COO, who received close to $331,000. Five other executives made more than $200,000 each.

COFAR President Thomas J. Frain maintained that with compensation levels that high, the May Institute’s executives should be held accountable for ensuring that all of its clients receive adequate and appropriate care.

Instead, Valerie said it is only now that she feels the organization understands and is responding to  her son’s needs.

Saw diet as cause of problems

Valerie said that while her son was at the first May Institute group home in Cotuit, his aggressive behaviors started to escalate, including banging his head against walls and tearing up his mattresses. She said the group home tried to bill her for the expenses; but, as his Social Security representative payee, she argued that the staff needed to try to understand his behavior.

Valerie maintained that dietary changes that she insisted upon reduced the head-banging. Those dietary suggestions included giving him whole foods, including fresh vegetables, fruits, and whole-grains and essential oils supplements.

Until recently, there was resistance to her efforts, even from the other co-guardian. As late as May 31, the other co-guardian stated to her in an email: “Instituting a diet change for anyone is a major step. Especially if the reason is not medically required.”

Prior to her son’s placement in his new group home, the May Institute residential director for Cape Cod wrote to Valerie on June 2, saying the provider would not be able to meet her dietary requirements for her son.

That has lately changed, Valerie said. The new group home staff appear to be making an effort to follow those requirements.

Pushback on other efforts to protect son

Valerie said that over the past year, she encountered pushback from the provider, the co-guardian, and DDS to other efforts she was making to protect her son. Those included her initial efforts to remove her son from the first group home, even after the abuse allegation surfaced.

Valerie said she asked DDS several times after learning of the March abuse allegation about moving her son to another group home; but the area office said nothing was available due to the COVID crisis.  As a result, she said, she took her son home with her.

In a May 25 email, the DDS-paid co-guardian stated, “I trust the May Institute and its staff to be working for the best for (her son). I am not in favor of looking for another residential placement… I am unaware of any other residential program that would accept (her son) or be in his best interests.”

As late as June 2, the co-guardian said he continued to “fully object to his (her son’s) removal from May until a response from DDS is obtained.”

Valerie claimed that as recently as a month ago, the co-guardian threatened in group meetings with DDS and the provider to have her removed as co-guardian. “He said he would take me to court to have me removed,” she said. She added that during those meetings, “no one from DDS or May said a word” in response.

Valerie said the co-guardian finally relented regarding removing her son from the first group home, and earlier this month approved his move to the new residence.

Denied use of bathroom

When the May Institute finally suggested the new group home for her son, Valerie took on the task of easing the transition for him to the new residence. She drove him to the new residence on May 26 to help him get acquainted with it and with the residents and staff.

But she herself wasn’t allowed inside, even to use the bathroom after the hour-long drive from her home in Chatham.

The reason given for denying her entry to the residence was the COVID crisis. But both she and her son were vaccinated, and her son was allowed inside even without a mask.

 “I didn’t understand why I couldn’t run in and use the bathroom,” she said. “I wasn’t asking to stay inside. I was asking for toilet facilities. It seemed unreasonable to me.”

When Valerie later wrote to May Institute officials to complain, the May institute residential director responded that, “At this time, indoor visitation is not approved under state guidelines.” But that was not the case according to the DDS guidance, dated March 19, which was then in effect.

The DDS visitation guidance gave the providers discretion regarding indoor visits, stating that any restrictions should not be arbitrary. COFAR reported in May that many DDS group home providers were continuing to impose highly restrictive visitation requirements on family members even if all of the residents had been vaccinated.  

Since her son moved into the new group home, Valerie said the residential staff has allowed her inside.

Valerie said she is hopeful that a new era of common sense-based care has begun for her son in his new group home. But she said she is mindful of the difficulties she has faced and the long road she has traveled to get him to this point.

She also recognizes that although the situation today for her son appears better than it was a few months or even weeks ago, that could change.

“I think it’s important for people to understand this type of situation isn’t a ‘one and done’ for a complex kid like my son,” she wrote to us. “His being nonverbal has been a big challenge for him and staff. I’ve been the bridge. I won’t always be here. I keep trying to figure that part out…”

COFAR and AFSCME warn that President Biden’s HCBS expansion plan could harm ICFs

June 21, 2021 3 comments

COFAR has joined with AFSCME Council 93, a key Massachusetts state employee union, in warning that President Biden’s proposed $400 billion expansion of home and community-based services for people with disabilities and the elderly could pose a threat to the future of state-run services.

In a jointly written letter to U.S. Senator Elizabeth Warren, COFAR President Thomas J. Frain and AFSCME Council 93 Executive Director Mark Bernard expressed overall support for Biden’s proposed expansion of access to affordable home and community-based services (HCBS) for people with I/DD and the elderly.

But the letter noted that Biden’s plan fails to similarly propose any additional funding for state-run Intermediate Care Facilities (ICFs) for persons with I/DD and complex medical needs.

Expanding only HCBS, the letter said, would pose “a serious threat to the future of critically important ICF-level care in this country…(and would) interfere with the ability of individuals, particularly those with severe forms of I/DD, to access the residential settings and programs that meet their needs.”

Biden’s $400 billion HCBS expansion plan is part of his $2 trillion American Jobs Plan, a proposal to Congress to rebuild the American economy and the nation’s infrastructure.

The two remaining state-run ICFs in Massachusetts are the Wrentham Developmental Center and the Hogan Regional Center in Danvers.

Steering increased funding only toward community care would create a strong incentive for Massachusetts to close the Wrentham and Hogan facilities, the AFSCME-COFAR letter stated.

In addition to stripping the DDS system of a badly-needed component of the continuum of care for the developmentally disabled, the closure of the ICFs would jeopardize the jobs of approximately 1,400 union workers represented by AFSCME alone. 

ICFs provide needed choice  

The joint letter noted that choice in care is only meaningful if individuals are given access to the services that they need and prefer. As the United States Supreme Court held in the 1999 Olmstead v. L.C. case, there must be a recognition that, on a case-by-case basis, that setting might be in an ICF.  

But the Massachusetts DDS does not routinely inform either individuals or their families who are waiting for residential placements even of the existence of either ICFs or state-operated group homes. The only “choices” routinely offered are corporate provider-run group homes or, in some cases, shared living arrangements. As such, families do not have a real choice along a full continuum of care.

The number of residents at the Wrentham and Hogan ICFs and in state-operated group homes has been declining in Massachusetts for several years. State funding for state-operated services has also been flat or has declined over the past decade.

In contrast, funding has skyrocketed for corporate, provider-run group homes. Successive administrations have long engaged in a race to privatize DDS services.

Calling for parity

The joint letter noted that In Fiscal Year 2019, Medicaid spending nationwide was $76 billion for HCBS and $9 billion for ICFs. Out of total Medicaid spending nationwide for long-term supports and services, 59% was spent on HCBS and 7% on ICFs. 

If the Massachusetts Legislature concurs with Governor Baker’s proposed funding for DDS for Fiscal Year 2022, the corporate provider line item will be funded at more than $1.4 billion. That would represent a 91% increase over the funding appropriated for the same line item a decade previously, in Fiscal 2012. 

In contrast, funding for state-operated group homes and the  two remaining ICFs has been on a relatively flat or downward trajectory respectively.

When adjusted for inflation, the governor’s Fiscal 2022 budget would cut funding for state-operated group homes  by somewhat less than 1% from the current fiscal year. The Wrentham and Hogan centers would similarly see their funding cut in Fiscal 2022 by a total of $2.1 million. Since Fiscal 2012, funding for the developmental center line item will have been cut by 32%.

The joint letter stated that the ongoing under-funding of state-run DDS programs has resulted in the increasing privatization of those programs and services.

Massachusetts State Auditor Suzanne Bump’s office reported in 2019 that while the resulting boost in state funding for privatized care produced surplus revenues for corporate providers, those additional revenues led to only minimal increases in wages for direct-care workers.

Disparity in care

The joint letter stated that In 1993, then U.S. District Court Judge Joseph L. Tauro  ordered that ICFs in Massachusetts not be closed unless it was certified that each resident would receive equal or better care elsewhere. Judge Tauro was bringing an end to a landmark consent decree (Ricci v. Okin), which had resulted in major upgrades in care and services in the DDS system.

As the years went on, however, the promise of equal or better care in the community was not realized. Deinstitutionalization has turned out to be fraught with problems for people with I/DD just as it has for people with mental illness.

In testimony in 2018 to the state Legislature’s Children, Families, and Persons with Disabilities Committee, Nancy Alterio, executive director of the Massachusetts Disabled Persons Protection Commission (DPPC), stated that abuse and neglect in the DDS system had increased 30 percent in the previous five years, and had reached epidemic proportions.

Yet many advocates for corporate providers, such as the Arc of Massachusetts, have pushed for decades for complete deinstitutionalization and for additional privatization of services for people with I/DD. They have been joined by administrations at the state and national levels, which have continually made state-run care and services targets for closure and outsourcing to contracted providers.

Since 2009, the U.S. Justice Department has filed, joined, or participated in lawsuits around the country to close ICFs regardless of whether the residents or their families or guardians wanted to close the facilities they were living in or not.

Olmstead did not call for the closure of ICFs

The late U.S. Supreme Court Justice Ruth Bader Ginsburg wrote the majority opinion in the Olmstead case (referred to above). The decision has continued to be mischaracterized as advocating or requiring the end of institutional care. It didn’t. Justice Ginsburg wrote a balanced decision that “supports both the right to an inclusive environment and the right to institutional care, based on the need and desires of the individual.”

The incestuous nature of the privatized system

The closures of ICFs around the country and the rise of the privatized system of care have provided financial windfalls for politically connected corporate contractors. Their executives have garnered large increases in their personal compensation, but have frequently neglected to pass through the  higher levels of state funding to direct-care workers. That is one of the reasons for the epidemic of abuse and neglect in the corporate provider-based system of care.

In 2015, COFAR calculated that more than 600 executives employed by corporate human service providers in Massachusetts received some $100 million per year in salaries and other compensation. By COFAR’s calculations, state taxpayers were on the hook each year for up to $85 million of that total compensation.

What we are asking for

The COFAR-AFSCME letter asked for Senator Warren’s support in achieving the following goals:

  • Parity in public-sector funding for ICFs and other state-run services with funding for privatized services. The letter suggested that an increase in the federal Medicaid match for HCBS should be matched by an increase in matching funding for ICFs. For example, a 10-percentage point increase in the federal match (FMAP) for ICFs would be roughly $1 billion nationwide. 
  • Ensuring a dedicated funding stream for state-operated group homes for individuals with I/DD.

Colleen Lutkevich retires after 35 years with COFAR

June 7, 2021 11 comments

Colleen M. Lutkevich, who advocated for 35 years on behalf of COFAR and served as its unpaid executive director for more than two decades, officially retired this month from the organization.

When she was 25 years old and pregnant with her first child in 1985, she first went to work part-time as a secretary for COFAR, which had only been established a couple of years earlier.

“People organized COFAR for the sad reason of having a loved one with an intellectual disability,” Colleen said in a farewell message to the Board this past week. “But they channeled their sadness into advocacy and made a real difference in people’s lives, and in the DDS system.

“I feel good about this decision (to retire) and I know that no one is irreplaceable!” Colleen’s message continued. “I remain willing to offer help and advice as needed and I wish all of you the very best in continuing  your work with COFAR.” She is continuing to serve as president of the Wrentham Family Association, an affiliated organization to COFAR.

She also is continuing to work as a high school guidance counselor in the Easton public school system, and raised three children with her husband, Paul.

colleen-family-photo

Colleen Lutkevich (2nd from right) with members of her family at a Wrentham Developmental Center holiday party in 2012. With her are (from left) her father, John Sullivan; mother, Gladys Sullivan; and sisters, Laura Bradley, Jean Sullivan, and Joyce Wise.

Colleen followed in the footsteps of her father, John Sullivan, and her mother, Gladys, in advocating for better care for her sister, Jean, who has an intellectual disability. Jean has lived at the Wrentham Developmental Center for more than 60 years. 

John Sullivan, who was one of the founders of COFAR, was among the plaintiffs in Ricci v. Okin, the landmark federal lawsuit in the 1970s that led to major upgrades in care in the state facilities. John died in 2017 and Gladys died in 2016.

Johanna Smith, COFAR vice president, responded to Colleen, saying, “I am in awe of your wealth of knowledge and experience in this area, and your kind and patient wisdom in helping people deal with so many difficult and emotional situations.  You say that no one is irreplaceable, but you have been a wonderful and unique resource to so many people and I’m sure they would agree that your help was irreplaceable in their lives.” 

Anne Paulsen, a Board member and former member of the state Legislature from Belmont, wrote, “In the short time I have been associated with COFAR, I have learned that you are the linchpin of the organization.”

Joe Corrigan, a Board member, said, “COFAR is losing a lioness.” He said his sister Pat and late brother Jack “benefitted from Colleen’s devotion.” 

Wrote Board member Deb Cooksey, “You have dedicated countless years of your life to this cause, and I’m so grateful for your leadership. So many families with loved ones with ID are better off because of you.” 

Advocacy efforts began in the Ricci era

In recounting her start in working on behalf of the developmentally disabled, Colleen listed names of people, in addition to her parents, who were instrumental in the early days of COFAR and the Ricci case. She mentioned Phil Corrigan (Joe Corrigan’s father), Louise Johnson, Charlie Hart, Mary McTernan, George Mavridis, Richard Krant, Ed Orzechowski, Frank Every, and Ed Stefaniak, among others. 

It was those people, she said, who taught her how to navigate what is now the DDS system, and how to make the case for better care for its clients.

She said her father, in particular, served as an inspiration to her in her advocacy. “My dad worked and fought his whole life to make the system work for the least fortunate among us,” she said. “His advice was always, ‘never be afraid.’”

In the early 1980s, she said, everyone belonged to the Arc of Massachusetts, which her father had also helped to found.

But at the height of the Ricci litigation, a split developed in the Arc organization between those who wanted to close all congregate care facilities such as the former Fernald Center, and those, like Sullivan, Corrigan, and others, who believed the facilities should remain as an option for those needing the intensive care and services they provided.

In 1983, the pro-facility contingent broke away from the Arc and formed COFAR. Colleen later took the secretary job, but the organization was experiencing financial problems and was unable to pay even her nominal salary of about $7,500 a year.  So she continued to work without pay in the same position until 1995.

Although she ostensibly quit COFAR in 1995, Colleen came back to fill the then vacant executive director position in 1998. Once again, she accepted the position without pay, and continued to work as a volunteer executive director ever since.

Worked to stop involuntary placements

Colleen recalled that among the highlights of her work for COFAR were successful advocacy drives to prevent involuntary placements of persons with intellectual disabilities (ID) in mental health facilities and nursing homes in the late 1980s and early 1990s.

In the first case, she said, COFAR worked with legislators to pass a guardianship transfer statute, which stopped transfers of individuals with ID to mental health facilities against their families‘ will. The law required that an individual’s primary diagnosis be an intellectual disability if the individual was “dual-diagnosed” with both ID and a mental illness.

In the second case, Colleen worked with the then Governor’s Commission on Mental Retardation to prevent inappropriate placements of persons with ID in nursing homes. “We found that residents from facilities were being sent to nursing homes as community placements,” Colleen said. With the help of the Governor’s Commission, COFAR and other advocates “blew it wide open,” she said.

A subsequent lawsuit, which became known as Rolland v. Patrick, led to the cessation of the placements in nursing homes, and earned a number of residents the right to return to the Wrentham Developmental Center. Colleen said she was especially gratified when she found that one person, who had been moved back to Wrentham, started talking again, and was able to visit with his three brothers, all with intellectual disabilities and living in different DDS placements.

Process became more adversarial

In the past 10 to 15 years, Colleen said, she found that COFAR’s relationship with DDS and successive administrations changed. That change, from a relatively cooperative relationship to a more adversarial one, came as those administrations began closing Fernald and other remaining Intermediate Care Facilities (ICFs).

While six ICFs still remained in the state as of 2008, only two remain today – the Wrentham Developmental Center and the Hogan Regional Center.

More and more, Colleen said, she found herself fielding calls from family members living in the community-based group home system looking for help in dealing with problems of neglect and abuse. “We became more of a watchdog organization,” she said.

While DDS commissioners and other administration officials would, in the past, often attend COFAR meetings and gatherings, “we now get the runaround and few replies,” she said.

Through it all,  Colleen said, her personal mission remained unchanged.  “My view is that’s why we’re here. Let me help that family.”

Yet another corporate DDS provider is slapped by a state audit

June 3, 2021 4 comments

The Berkshire County Arc is one of the the latest in a series of corporate residential providers to the Department of Developmental Services (DDS) that have found themselves targets over the past two decades of the state auditor for misuse of state funds.

A few other examples include audits of Brockton Area Multi Services just this week; Human Service Options and Nonotuck Resource Associates in 2016; the May Institute in 2013; Crystal Springs in 2012; and Toward Independent Living and Learning in 2002.

From personal use by corporate executives of the Berkshire Arc’s credit cards to personal use of its frequent flyer airline miles, the problems cited in the Berkshire Arc audit sound almost monotonously familiar.

The Berkshire Arc and its lobbying affiliate, the Arc of Massachusetts, have hit back, arguing that many of the audit findings were technical in nature.

To be sure, the Berkshire Arc audit does have at least one finding that seems to imply a largely technical violation involving the financing of capital improvements and maintenance of residential and other properties. The Berkshire Arc shouldn’t have charged the state for that, the audit said, because the properties are technically owned by another nonprofit affiliated with the Berkshire Arc.

That violation seems technical because it seems that the Berkshire Arc’s clients did potentially benefit from the capital improvements.

But other findings about misuse of credit cards and airline miles were clearly about people in high-level management positions allegedly benefiting themselves personally. One would think that after decades of these kinds of audit findings, the heads of these organizations would finally put an end to these practices.

“Our audit makes clear that those in leadership fell short of meeting their oversight and fiduciary responsibilities,” State Auditor Suzanne Bump said in a press release.

But it seems these kinds of problems will likely continue to occur in a system that has seen care for persons with developmental disabilities largely handed over to corporate contractors to DDS. It’s a system in which DDS itself and other regulatory agencies appear to constantly fall short of their own oversight responsibilities.

The Berkshire Arc received over $25 million in funding in Fiscal Year 2019 from state agencies including DDS, the Massachusetts Rehabilitation Commission, and the Commission for the Blind, according to the audit.

Among other problems cited by the audit, the Berkshire Arc allegedly used its credit cards to pay $124,247 in expenses that were non-reimbursable under its state contracts because they were inadequately documented, were not related to the organization’s social service program activities, or were luxury items otherwise prohibited by state regulations. Those items included valet parking, priority boarding, main-cabin extra seating on airlines, and alcohol.

The Berkshire Arc responded that the extra main-cabin seating was purchased so an individual with disabilities could attend a national self advocacy conference in 2018. But the audit stated that the supporting documentation that the Berkshire Arc provided indicated that the extra cabin seating was purchased by and for the organization’s chief operating officer, with no indication that it would be used by one of the clients.

The audit found that Kenneth Singer, the Berkshire Arc’s president and CEO, used credit card reward travel miles earned by the organization for his personal use in violation of state regulations and the organization’s own policy. The audit alleged that “at a minimum,” Singer redeemed miles earned by the Berkshire Arc on agency credit cards to pay for trips made for personal reasons to Hawaii and Mexico.

As a result of this issue, the audit stated, the Berkshire Arc “lost the opportunity to reduce its travel costs…(and) the money saved could have been used to provide additional services to its clients.”

The auditors also determined that Singer’s wife, Christine, who was working as a consultant to the Berkshire Arc, used the organization’s credit cards for $2,057 in trips, meals and gifts for a Berkshire Arc conference. Further, the audit noted, the Berkshire Arc charged its client funds accounts $43,192 in credit card purchases for which it did not have the required documentation.

In what seems to be the technical violation, the auditor said the Berkshire Arc paid for $487,341 in capital improvements to properties owned by a related party. The audit claimed those expenses were for assets that were not owned by Berkshire Arc and were therefore not program-related.

The Berkshire County Arc’s response was that its properties are “100% occupied and utilized by Berkshire County Arc for residential services, day services, programming, and operations.” It doesn’t appear that the audit questioned or contradicted that assertion.

The audit recommended, among other things, that the Berkshire Arc establish monitoring controls on all credit card expenses before payment, and that the organization “properly identify and correctly report all non-reimbursable expenses.”

We’re glad the state auditor is periodically reviewing the books of DDS providers, and making recommendations for correcting the deficiencies in financial management. The Berkshire Arc, in particular, also pledged to revamp some of its bookkeeping and management practices.

But what is needed is a more comprehensive review of the DDS system as a whole to address the patterns of faulty management that seem endemic to the system given that they keep coming up again and again in the audits. It is somewhat disappointing that these audits are done piecemeal. We have long called for a comprehensive investigation of the DDS system in Massachusetts.

If nothing else, the continuing series of piecemeal findings by the state auditor of mismanagement among providers shows just how much such an investigation is needed.

Proposed commission on former DDS state schools needs to acknowledge upgrades in care

May 26, 2021 3 comments

The history of state-run institutions in Massachusetts for persons with intellectual and developmental disabilities is critically important for us to know.

That’s why we support legislation in concept that would establish a commission (S.1257and H. 2090) to study the controversial and often dark history of the state schools.

At the same time, we are pushing for changes in that legislation to ensure that the commission recognizes the significant upgrades in care and services that occurred in those facilities in the 1980s. Those changes were primarily due to Ricci v. Okin, a landmark federal consent decree case overseen by the late U.S. District Court Judge Joseph L. Tauro.

In that regard, the proposed commission needs to recognize that the Wrentham Developmental Center (WDC) and the Hogan Regional Center in Danvers — the state’s two remaining developmental centers or Intermediate Care Facilities (ICFs) — provide state-of-the-art care and services today. We don’t want to see the commission used as a political cudgel to attack ICF-level care in Massachusetts.

The ICFs of today are not the same institutions that were subject to the Ricci v. Okin litigation, which had sought to correct horrendous warehouse-like conditions in them. Nevertheless, ICFs have remained political lightning rods for advocates of deinstitutionalization and privatization of remaining care and services for the developmentally disabled.

For that reason, we want to make sure that the proposed membership of the commission and its written charge will not lead to a preordained conclusion that leaves out the history of these facilities after Judge Tauro’s intervention. To help ensure a balanced review by the commission, we are seeking additional seats on the panel for family members and guardians of current residents of WDC and Hogan.

Statements made by some key supporters of the commission have presented the former Fernald Developmental Center and other state-run congregate care facilities in a negative light. It also appears that the makeup of the commission, as currently described in the legislation, would primarily consist of opponents of ICFs and supporters of further privatization of DDS services.

COFAR has contacted Senator Michael Barrett and Representative Sean Garballey, the prinicipal sponsors of the legislation, to express our concerns.

We do support efforts, as described in the bill, to study the past history of institutional care in Massachusetts, and we agree with the premise of the legislation that records on these facilities are scattered and should be organized. We also strongly support efforts to identify persons buried in unmarked graves on the grounds of some of the former facilities.

As noted, however, a complete history of the state facilities in Massachusetts should include Judge Tauro’s assessment of the developmental centers in 1993, as he disengaged from the Ricci case. He noted that improvements made to the facilities as well as community placements had “taken people with mental retardation from the snake pit, human warehouse environment of two decades ago, to the point where Massachusetts now has a system of care and habilitation that is probably second to none anywhere in the world.”

Alex Green, a key proponent of the commission, recently told Colleen M. Lutkevich, COFAR’s executive director, that he is sensitive to our concerns and will advocate for changes to the makeup of the panel.

The bill currently specifies that representatives of the Arc of Massachusetts, the Disability Law Center, Mass. Advocates Standing Strong, Mass. Advocates Organizing for Change, and the Center for Independent Living would be appointed to the commission. All of those organizations are on record as supporting the closure of ICFs in the state.

The bill also states that additional “community members” and former members of state institutions would be given seats on the commission. But the measure doesn’t recommend seats for current residents of either WDC or Hogan, or their family members or guardians.

We think the perspective of those current residents and their families and guardians is needed to provide a full understanding of how the ICFs function today.

In a written statement provided to COFAR, Green said he is seeking to amend the legislation to add two seats for “facility families–whose experiences deserve representation.” He said he will also seek to add a third seat “for another participant with an intellectual disability, ensuring that the composition of the commission adheres to the intent of being a majority of people with disabilities.”

Green added that, “Many of these families and individuals were part of the civil rights movement that led to the (Ricci v. Okin) consent decree, and also ensured that its implementation resulted in an unprecedented overhaul of, and investment in, these facilities.”

We support adding those seats, but would note that even with three seats on the commission, it would appear that pro-ICF members would be vastly outnumbered by proponents of privatized care.

Green said there were 27 groups “and hundreds of citizens signed on in support of the passage of these bills (the House and Senate versions of the legislation), along with co-sponsorship from 10% of the Legislature. Collectively, these individuals and groups represent hundreds of thousands of disabled people across the Commonwealth.”

Green added that, “COFAR’s support means that important amendments will be made to the bills, helping to ensure that a full, expansive, accurate understanding the consent decree era is included.”

Commission’s written charge needs to be expanded to recognize ICFs today

In addition to specifying that there would be current facility family members on the commission, the language in the legislation needs to be changed to specify that the commission will assess the quality of life of current residents of the Wrentham and Hogan Centers. The legislation, as currently worded, only refers to assessing the quality of life of “former residents (of state institutions) now living in the community.”

The quality of life of both current and former facility residents needs to be assessed in order to present a balanced view of Wrentham and Hogan today. Similarly, the bill language currently only requires that the commission “collect testimonials” from former institutional residents. It does not contain the same requirements regarding current residents. Again, those assessments and testimonials from current residents are needed for that full understanding.

“If we don’t talk about the success story that is Wrentham and Hogan today, it’s not telling the whole story,” Lutkevich said. 

It’s important that we get the history of the state facilities right. That’s because we think that in many ways, the warehouse conditions of the institutional system prior to the 1980s are continuing today in many community-based, privatized settings. We hope that sometime in the not-too-distant future, a commission will be established to study that situation.

Families still restricted in visiting loved ones in DDS system even if residents have been vaccinated

May 19, 2021 2 comments

Throughout the COVID-19 pandemic, we have questioned overly restrictive and sometimes contradictory family visitation policies imposed by both the Department of Developmental Services (DDS) and its residential providers.

What seems surprising is that now, with most residents in the system apparently having been vaccinated, those restrictive and contradictory policies appear to be continuing.

In response to a query sent to our members last week, several said they were continuing to be sharply restricted or even prohibited entirely from entering group homes in which their loved ones are living. Some of those family members are nevertheless allowed to take the residents home for visits.

As we have reported, while most residents of group homes and developmental centers in the DDS system appear to have been vaccinated, a significant percentage of staff have not been. Yet, the restrictions on visitation or contact appear to be aimed exclusively at family members and guardians of residents.

“To hold families and guardians to a higher standard than direct care is unfair and makes no sense,” said Thomas J. Frain, COFAR Board president. “Family visits at this time should not be any more restrictive than they were before the crisis. But some residential managers are clearly using COVID restrictions as a weapon to control family access to their loved ones.”

In an email sent Monday (May 17) to DDS Commissioner Jane Ryder, I asked why visitation restrictions were still ongoing in residences in which all residents have been vaccinated. Ryder, to date, has not responded.

DDS visitation guidance, dated March 19 of this year, continues to give providers discretion to limit the number of visitors and restrict visits under any circumstances the providers deem pose a threat to safety. The guidance document states that any such restrictions should not be arbitrary.

While the March guidance does allow visitors who are fully vaccinated to meet with vaccinated residents in their rooms, it states that providers must restrict all visitation if any staff are infected or presumed infected within the past 14 days. It apparently doesn’t matter under the policy whether all residents have been vaccinated or not.

Family members and guardians cite arbitrary restrictions

A number of other COFAR members said this past week that they have been subjected to differing and sometimes seemingly arbitrary restrictions on visitation.

Colleen Lutkevich, COFAR executive director, said all residents in her sister’s house on the Wrentham Developmental Center campus have been quarantined from May 11 through May 21 because two staff tested positive for COVID. Yet, all residents have been vaccinated, she said, and none are currently testing positive.

Frain said he, himself, was subjected to what appeared to be an arbitrary restriction by staff after his brother experienced a medical emergency in his group home in March. Frain had entered the residence along with ambulance personnel to attend to his brother.

When the emergency was over, Frain said, he was singled out by two staff members and told he alone must leave by the back door of the residence because he hadn’t been tested on entering for COVID. Frain said he complied with the order, but feels it was unnecessary and was possibly an effort to personally humiliate him as a family member.

One COFAR member said that even though her son has been vaccinated — and she believes all other residents of his group home have been vaccinated as well — she and her husband have not been allowed to enter the residence. Nevertheless, she said, they are allowed to take their son home for overnight visits.

“It makes no sense,” the COFAR member wrote in an email. “At least we can be with him, so I really can’t complain, but it would be nice to see what is going on in the house.”

As is the case with a number of families, the COFAR member said she needs to go through her son’s clothes for the seasonal change to spring.  Because of the no-entry restriction, the staff brought his belongings to the backyard. “I cannot bend over,” she wrote, “so it was difficult.”

Yet we were told that in another group home even unvaccinated family members were allowed inside to their loved-one’s bedroom to change his wardrobe to spring.

Another COFAR member, who wanted to change her son’s clothing from winter to spring, said she is currently allowed to enter the residence once a week.  She too can take her son home at any time.

Another provider requires a week’s notice prior to visits by family members. In yet another case, visitors are allowed in the house, but only for a maximum of 30 minutes.

COVID infection rates not correlated with restrictions on family visits 

State data show the rate of COVID infection in the DDS system among both residents and staff declined earlier this year, reaching lows at the end of March. But since then, as recent weekly online state facility reports show, the decline has stalled, and rates of infection have held steady.

As of May 11, 10 residents and 14 staff in the state-operated group home system continued to test positive for COVID. As of that date, 37 residents in provider-run group homes and an unreported number of staff continued to test positive.

There were as many as 5 deaths among residents in the group home system due to COVID in the seven days prior to May 11.  No data on COVID-related deaths are available for staff.

While administration officials have not responded to our requests for comment on the matter, we think the decline in the COVID rate in the DDS system from January through March was largely due to the vaccinations of most of the residents and at least some staff, which began in January.

Although data is lacking, we think the continuing presence of at least some COVID in the system since the end of March may be due to the apparent continuing resistance of a significant number of staff to getting the vaccine.

As far as we can tell, residential DDS providers have continued to impose the same types of restrictions on family visits that they imposed prior to the first vaccinations in January. So, we don’t see that those restrictions as related to the decline in COVID rates since January or to the continuing presence of infection in the system.

It’s time, as Tom Frain said, for DDS to issue new, unambiguous guidance to providers to restore visitation policies to what they were prior to the pandemic.

Stan McDonald, who fought for guardianship and visits from his son, dies

Stan McDonald, who fought for many years for guardianship of his son, Andy, and championed a guardianship rights bill for parents of persons with developmental disabilities, died on May 6, his wife Ellen announced. He was 85.

We have written about Stan and Ellen’s attempts to overturn a lifetime ban imposed in 2006 by a probate court judge on visits by Andy to his hometown in Sherborn. Andy, who is now 53, is intellectually disabled, and has lived since 1993 in a group home funded by the Department of Developmental Services (DDS).

Ellen said this morning that despite the ban, Andy will be allowed to attend his father’s funeral in Sherborn. 

Stan, Andy, and Ellen in 2012

In 1986, Stan and his previous wife agreed to the appointment of a guardian for Andy as part of the settlement of a longstanding custody battle over him. Stan was unsuccessful in subsequent years in regaining his guardianship, even though his former wife, local legislators, and other supporters publicly expressed support for that.

In light of his experience, Stan waged a long-term battle for a bill in the state Legislature that would require that probate court judges consider parents as suitable guardians of persons with intellectual and developmental disabilities. COFAR is continuing to advocate for passage of the legislation, now H.1733.

In his 2006 ruling barring Andy from ever returning to Sherborn, former Probate Judge Edward Rockett stated that Andy had been arrested in 1990 for the sexual assault in his hometown, and was too dangerous to be allowed to ever return there. But it was apparently not the case that Andy was ever arrested or charged with a crime of sexual assault, according to Stan and Ellen.  Their claim appears to be backed up by the district court record and a subsequent police report.

The district court record states that Andy was arrested in Sherborn in May of 1990 for threatening an unidentified person during a telephone call.  The nature of the threats was not disclosed.  In July of that year, he was charged with disturbing the peace in downtown Sherborn, according to a police department report. That same day, he was charged with assault after he punched Ellen, his stepmother.  Stan and Ellen said the punch was accidental.

Stan and Ellen maintained that Andy has not exhibited any significant behavioral problems in the past decade. He has been taken on community outings to many places other than his home without any behavioral incidents, according to his yearly clinical care plans.  He was described in one care plan as “kind and friendly to others,” and as “a polite man.”

While an appeals court upheld Rocket’s decision in 2009, barring Andy from returning to Sherborn, the appeals court stated in a footnote that “some of the fact findings adopted by the judge (Rockett) were not supported by the evidence…” The footnote specifically stated, with regard to Rockett’s claims about the arrest for sexual assault, that “the specific facts (of the incidents in Sherborn) and the charges are not clear from the record.”

We have long called for an independent clinical evaluation of Andy. Such an evaluation was also urged by the McDonalds’ local legislators.

Stan and Ellen maintained that Andy is not dangerous and should be allowed supervised visits home.

Successful advocacy for Andy

While Stan never was granted guardianship of Andy, he was successful in advocating for better care for Andy in many instances. That advocacy included a successful effort to get clinicians to discontinue administering Stelazine, an anti-psychotic drug, to Andy. The drug had caused him to develop Tardive Dyskinesia, a disorder  resulting in involuntary, repetitive body movements.

Supporters urge restoration of Stan McDonald’s guardianship of Andy

In 2013, State Representative David Linsky, the main sponsor of Stan’s guardianship bill over the years, wrote a letter in support of Stan’s appointment as Andy’s guardian. Linsky noted that he had known Stan for 14 years and “can personally attest that he is deeply committed to his son Andy’s care and only wants the best for him.”

John Carroll, a former residential counselor to Andy at the Cardinal Cushing School, also wrote to DDS that year to say that he had frequently observed visits to Andy by Stan and Ellen, and that “I have seen theirs to be a bond that is unique and irreplaceable. Stanley’s and Ellen’s dedication to Andy’s care and treatment in all circumstances leaves no question in my mind that Stanley McDonald is the sole individual with the knowledge, experience, and love, deserving to have responsibility for major decisions in Andy’s life as guardian.”

And Stefan Grotz, the original court-appointed guardian in the case, wrote in 2002, after he had stepped down from that role, that “never have I met a more passionate advocate for a son than Stanley McDonald.” He strongly recommended to the court that McDonald be appointed as his son’s guardian. 

Guardianship bill

H.1733, which Stan advocated for continuously, would require probate court judges to presume that the parents of developmentally disabled persons, or third parties designated by the parents, are suitable as guardians for those individuals.

The bill would level the playing field in the DDS–probate court system, which often appears biased against families. As we have reported, probate judges frequently appoint attorneys as guardians of developmentally disabled persons, passing over their family members.

If they don’t have guardianship, family members can find themselves with virtually no rights or input into the care of their loved ones, and may even be excluded from contact with them.

In Stan’s memory, we would urge people to contact the Judiciary Committee, and urge the committee to act favorably on H.1733. The co-chairs are Senator James Eldridge (phone: 617- 722-1120; email: James.Eldridge@masenate.gov ) and Representative Michael Day (phone: 617-722-2396; email Michael.Day@mahouse.gov).

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