The following public comment was submitted to the Interagency Autism Coordinating Committee in advance of its July 21-22, 2021 meeting. It is public record and reprinted here:
Stephen Wallace, J.D. and Debra Wallace
Red Rock, Texas
Father/Co-guardian of [name redacted], Austin State Supported Living Center ICF Advocates for Choice
Parents and Allies of Remarkable Texans
IACC Workshop- Keeping the Olmstead Promise
My name is Stephen Wallace, and I am first and foremost the father and co-guardian of a forty year old son with severe autism. As I thank you for the opportunity to address this committee, I want to note that while I have been a father dealing with autism for nearly four decades, I have actually been confronting the issue of autism for at least a decade longer. I volunteered and later continued to work as a teacher and daily living trainer for autistic children in the late 60s and early 70s. In a cosmic case of irony, in 1980, our son [name redacted] was born. By 1983, he had received multiple diagnoses and confirmations as having a pervasive developmental disorder with autistic tendencies.
Our son, the fourth of five children, remained home and a vital part of our family for the first 18 years of his life. But as the years progressed, he became more aggressive and self-injurious. We fought for inclusive programs with behavioral interventions at school, and even obtained the highly sought after and coveted in-home waiver service, which provided the latest and best services available. By 1998, all of the providers the state could offer refused to work with our son, and his school had long given up being able to deal with the increase in his aggression. After multiple near death experiences and almost regularly scheduled visits to the emergency room, we realized we had no other option than to place him in a highly structured residential facility with 24 hour a day protection and supervision.
The day we placed [name redacted] remains the darkest day of our lives to date, but that previously unthinkable option was the only one left that offered the hope of keeping him alive.
When the time came, we had to fight to achieve the very thing we had most feared. The movement toward community placement had already begun in earnest, and congregate care was already seen as an outdated concept.
“Those on the severe end of the spectrum who demonstrate aggressive or self-injurious tendencies continue to grow in numbers.... The simple fact is, thousands upon thousands of families will shortly be confronted by the need for more intensive care and treatment for their loved ones with autism. ”
Many of those who parent, protect, or love someone with autism will unfortunately face that same dilemma that confronted our family. Those on the severe end of the spectrum who demonstrate aggressive or self-injurious tendencies continue to grow in numbers which exceed effective service provision available in the home or community. The simple fact is, thousands upon thousands of families will shortly be confronted by the need for more intensive care and treatment for their loved ones with autism. Growth in effective residential services has been stymied by a lack of resources, and compounded by the growth and acceptance of a mythical notion known widely as the “Olmstead Mandate”. The myth grows from a 1999 Supreme Court decision rendered in Olmstead v. L.C. (527 U.S. 581), which held that unjustified segregation for persons with disabilities is a violation of the Americans with Disabilities Act, but stated the ruling was conditioned upon three factors which must be considered in each case; the treatment team responsible for the care of that individual agreed that appropriate services could be offered in a less restrictive environment, that the individual receiving services did not object to being relocated to a less restrictive environment, and that the state could offer those same services in a less restrictive setting without undue hardship. The very conditional and specific holding has, over the last 22 years, been transformed by community advocates, and agencies on the federal and state level, into a mythical tool to indiscriminately close needed residential facilities, or at least demonize their very existence.
The narrative created and enhanced by this myth is now leading to, for many of us who rely on the intensive care offered by congregate facilities, a dystopian future where our loved ones have no refuge. Currently, thousands of individuals exist in our communities, languishing with unmet needs and protections, isolated in plain sight of a society that has little understanding or tolerance of the needs of the profoundly or severely afflicted. Even more will follow as increasing numbers age out of the education system and are thrown into the void of non-existent services for adults with autism.
“Currently, thousands of individuals exist in our communities, languishing with unmet needs and protections.... Even more will follow as increasing numbers age out of the education system and are thrown into the void of non-existent services for adults with autism.”
It is time that the dangerous narrative of independence or bust be revealed for what it is; a notion fitting some, but leaving so many more without even the most basic services to keep them out of harm's way. A realistic but compassionate view of the difficult futures faced by those with severe autism, must be adhered to, and it must contain the realization that some of our numbers will never develop the skills or capacity to protect themselves from abuse, exploitation, hunger, neglect or death. If not, then the current trend of community for all will result in an abandonment of our obligation to care for those who cannot care for themselves and end with the most profoundly impacted individuals being lost as collateral damage to the movement. True advocates for all of the disabled, and agency officials who create and administrate must awaken to the coming tide, if the most needy on the autism spectrum are to thrive and survive. Now is the time for those who can mold the future to realize that more intensive services such as ICF congregate care facilities are not only still relevant , but will be even more essential in the future. The myth of the Olmstead Mandate must be counteracted by an intelligent and responsible provision of services for a population which will not cease to be just because we deny their existence.
When It Comes to People Like My Daughter, One Size Does Not Fit All - New York Times By David Axelrod - July 4, 2021
My daughter, Lauren, turned 40 last month. She is happy and healthy. And that is nothing short of a miracle.
From the moment my wife, Susan, found Lauren blue and limp in her crib at the age of 7 months — the consequence, we later would learn, of epileptic seizures she suffered in the night — Lauren’s life has been a struggle.
These brutal seizures would continue, poorly controlled, for the next 19 years, roiling her developing brain and necessitating an ever-shifting regimen of medications with punishing side-effects, of surgeries and hospitalizations. More than once, we feared we would lose her.
Lauren’s doctors finally found a cocktail of medications that would work to subdue the seizures, but the battering her brain took from the ordeal left her with significant developmental deficits.
We moved our family from one town to another in search of special education programs that would include her, with adaptations, in regular classrooms. But as the years went by and her classmates matured emotionally and intellectually, the gap between Lauren and her peers became a chasm. The girls and boys around her were growing into young women and men, with all that entails, while Lauren was still in many ways a child, poignantly struggling to find her place.
Lauren’s seizures had been terrifying and painful. But her loneliness was absolutely heartbreaking. She longed for friendships and, whenever she got the chance, gravitated to others with similar challenges and shared experiences. Lauren didn’t need words, which were often hard for her to find, to communicate loud and clear to us what mattered most to her.
When high school ended, we faced a cliff familiar to many parents of children like Lauren. In Illinois, as in most states, jobs and services for adults with disabilities are woefully inadequate. We struggled to find programs and opportunities for the relationships that Lauren craved.
We agonized over whether this would be her future, sitting at home, waiting for activities, without an independent life of her own. We anguished over what would happen when we were gone.
But 19 years ago, that all changed.
Lauren moved to Misericordia, a remarkable community for people with intellectual disabilities near us on Chicago’s North Side. For the first time, her days were rife with activities and her life was filled with friends.
No, it’s not the life we envisioned for Lauren the day she was born, a seemingly healthy, bright-eyed little girl. But looking back at the obstacles she’s faced, she’s thriving in ways that once seemed impossible.
Lauren shares an apartment with two other women in a bustling dormlike setting on a pleasant, leafy campus. She and her friends walk to nearby shops and restaurants. She has vocational activities and jobs on campus and off, which have given her a sense of worth and responsibility. She sings and signs in a choir, takes art and cooking classes, and hits the fitness center or pool every day.
While she has the care and supervision she continues to need — and always will — she also is more independent than we ever could have hoped.
Most of all, she is happy. Genuinely happy.
I wish that were the end of the story.
But today, Lauren faces another battle, not with epilepsy or the toll it’s taken, but with policy changes that could deny her and others with intellectual disabilities the life they choose in concert with their families and loved ones.
The issue is federal Medicaid funding to states, which helps underwrite residential facilities for people with intellectual disabilities, and the conviction of some advocates and policymakers that larger settings like Misericordia should be discouraged.
The debate is rooted in an ugly history. For generations, Americans with intellectual disabilities were too often sent to large institutions where they were warehoused, abused and deprived of the opportunity to live their fullest possible lives.
I am profoundly grateful for the disability rights movement that has waged a decades-long battle to shutter such institutions, many of which were run by the states, and to win for people with intellectual disabilities the right to live in small apartments and homes with services in residential neighborhoods.
But now the ideal has hardened into dogma: All larger communities are bad. All small, neighborhood-based group homes are good.
Of course, neither of these things is true, and the rigidity of that thinking denies the simple truths that there are good and bad places, large and small, and people with disabilities are not all the same. Like anyone else, they have different personalities, capacities and preferences.
Some may thrive in small homes or apartments in residential neighborhoods. Lauren has that option through Misericordia but prefers the socialization of her dormlike setting and the constant stimulation of campus life.
But rather than ensuring a full range of high-quality residential options for people with disabilities to fit their individual needs and circumstances, the prevailing view of many policymakers is to compel a one-size-fits-all answer.
What is painful is that these changes are being promoted by good people, trying to do the right thing. Many are my friends and former colleagues.
We saw this play out through the American Rescue Plan Act, enacted in March, which explicitly provided disproportionate aid to smaller community-based group homes and in-home care settings over larger settings like Lauren’s home in Misericordia.
The Rescue Act included emergency funding to increase pay for direct-care workers in home and neighborhood-based settings. But it omitted equally deserving women and men who work in larger settings and devotedly support Lauren and others. (Misericordia received some of this emergency funding but only for its neighborhood-based group homes, not the main campus.)
Now a proposal by Democratic leaders in Congress — the Better Care Better Jobs Act — would vastly expand federal funding for home and community-based services for the elderly and people with disabilities, which I strongly support. It is badly needed and long overdue.
But as currently written, the plan also would make the funding disparity based on size and type of care permanent, which is wrong. It is a formula that disadvantages larger settings and gives states further incentive to shift away from them, even if they are doing extraordinary work.
Instead of judging by size, isn’t the right path to fully fund an array of high-quality options and afford people like Lauren the dignity of choice and the happiness they deserve?
Letter to Senator Bob Casey regarding the Build Back Better Act
Senator Bob Casey
United States Congress
Re: Amend the Build Back Better Act to provide an equal funding increase for Intermediate Care Facilities for the care of severely autistic and profoundly medically fragile citizens
Dear Senator Casey:
My name is Susan Jennings and we have a severely autistic adult son named Joey whose disability requires the professional, therapeutic level of care found only in the Intermediate Care Facility, (ICF).
We spoke to you face-to-face along with a delegation of community leaders who represent Intermediate Care Facilities in their districts, family members of the severely disabled, leaders from AFSCME, the staff who render such professional and compassionate direct care service to our behaviorally challenging and profoundly medically impacted family members and our Pennsylvania State Legislators from both sides of the political spectrum in September about the vital need for ICFs, as an ICU level of care for the severely disabled. As we asked you then, we are pleading with you now to preserve ICF care in the disability care system.
I told you about my son's experiences in HCBS care, where, in only 4 years time, he suffered a broken eye-socket, was exposed to pornography, was toxically overmmedicated to the point where he developed disfiguring female breasts and Parkinsonian tremors, and would elope into the city streets. HCBS services could not successfully manage the challenging behaviors which are common to severe autism, so the HCBS providers traumatized him further by discharging him from 5 different community homes and apartments and offloading him into 5 different psychiatric wards where he experienced the phenomena called "psychiatric boarding", languishing in psychiatric wards, not because he needed to be there, but because there was no place safe from him to go. "Psychiatric boarding" is becoming increasingly common in the autism world, as congregate care settings, such as ICFs, that would be more humane and appropriate are being systematically eliminated from the disability care system. See Nowhere to Go: Young People with Autism Languish in Hospitals
Unlike ICFs, HCBS services do not have on-site multi-disciplinary treatment teams, campus facilities and amenities, closely supervised trained, professional staff or any federal regulations providing essential oversight and accountability and safety for the residents and their families. HCBS services can and do refuse to provide services for the most needy.
In regards to the severe autism population, here is a quote from Dr. Lee Wachtel of the renowned Kennedy-Krieger Institute who spoke about the service needs of this population to the Interagency Autism Coordinating Committee. She said "Second, the IACC (Interagency Autism Coordinating Committee) must promote a CHOICE BASED APPROACH to service provision that ensures adults with aggressive and self-injurious behaviors have a place to go when their families can no longer safely care for them. Some autistic adults have severe behaviors that cannot be managed in community settings. They may not exhibit them all the time, but they need to be somewhere with experienced caregivers who can manage dangerous behaviors when they do occur, with access to professionals who can treat them, as well as structured programs to maximize community access as well as providing satisfying site-based programming. This population needs to be surrounded with well-trained, well-paid aides, because the health and happiness of these adults depends almost exclusively on that one variable. The IACC should write a white paper focused specifically on the service needs of this population."
Dr. Wachtel is describing congregate care and campus-based facilities such as ICFs, homesteads, farmsteads and cottage campuses.
The Build Back Better Act as presently written, allocates $200 Billion dollars for home and community-based services (HCBS). HCSB services will receive 1000 times more funding than ICFs. This bill as written sets up a discriminatory funding structure that will incentivize States to eliminate needed ICF care for our profoundly disabled family members, putting their lives in jeopardy. This bill fundamentally transforms the disability service system without holding any hearings from the actual stakeholders that will be devastated by this change, allocating the most amount of money to the least disabled and leaving the most disabled to fend for themselves. When the good institutions of the ICFs are eliminated, it will leave the "bad" institutions of jails, retro-fitted emergency rooms, psychiatric wards and finally the homeless shelters for our loved ones.
Expanding choice for the least disabled should not come at the expense, suffering, death and sacrifice of the most disabled.
This bill as written also makes Money Follows the Person a permanent government program without needed hearings from stakeholders about how this program is misused for the wholesale closure of ICFs. MFP research was conducted by Mathematica Policy Research. One Mathematica representative stated during the Community Living Policy Center (CLPC) Webinar Impact of MFP webinar on July 25, 2019 that the total cost has been over $4 billion (2005-2018) but only produced $1 billion dollars in savings to the States.
At our September meeting you said that you were in favor of increasing funding to ICFs as well as HCBS services. Our families desperately need you to honor equal and non-discriminatory funding for the ICF and other congregate care services our loved ones must have to survive.
Mother/Co-guardian of Joey, White Haven State Center, White Haven, Pennsylvania
ICF Advocates for Choice - President
COFAR and AFSCME warn that President Biden’s HCBS expansion plan could harm ICFs
June 21, 2021 By David Kassel
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.