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