Home > Uncategorized > Congress still trying to eliminate congregate care for developmentally disabled

Congress still trying to eliminate congregate care for developmentally disabled

In their latest attempt to do away with congregate care for persons with intellectual and developmental disabilities and promote further privatization of services, lawmakers in Washington have proposed the Home and Community Based Services Access Act (HCBS Access Act).

While we support the intent of this legislation to eliminate waiting lists for disability services, the bill’s provisions are heavily biased against congregate care facilities such as the Wrentham Developmental Center and the Hogan Regional Center in Massachusetts. The bill is also biased against sheltered workshops and other programs for people who are unable to handle mainstream or community-based settings.

In that regard, this legislation is similar to the federal Disability Integration Act of 2019, which ultimately did not pass in the previous congressional session.

While we think it was good news that the Disability Integration Act didn’t pass, the bad news is that many in Congress, including most, if not all, of the Massachusetts delegation, appear to subscribe to the notion that community-based or privatized care is the only appropriate option for people with cognitive disabilities. 

Every member of the Massachusetts delegation signed on to the Disability Integration Act, which would have encouraged further unchecked privatization of human services, diminished oversight, and reduced standards of care across the country. The HCBS Access Act would do so as well.

Comments are due April 26 on the HCBS Access Act, which has been proposed by Representative Debbie Dingell (D-MI), Senator Maggie Hassan (D-NH), Senator Bob Casey (D-PA), and Senator Sherrod Brown (D-OH). Comments can be sent to HCBSComments@aging.senate.gov.

We will also be urging the members of the Massachusetts delegation to take another look at the issue of congregate care, and reassess their positions.

The HCBS Access Act actually appears to go a step beyond the Disability Integration Act in that it would potentially eliminate funding for Intermediate care facilities (ICFs), including the Wrentham and Hogan Centers.  Currently, the federal government pays 50% of the cost of care in both ICFs and community-based group homes. The state pays the other 50% of the cost.

The HCBS Access Act would change that federal-state funding formula to require the federal government to pay 100% of community-based group home costs. The federal share of the cost of ICFs would remain at 50%. That would place enormous pressure on states to eliminate ICFs since they would continue to receive only 50% federal funding.

As the National Council on Severe Autism (NCSA), a nonprofit organization, noted in comments on the HCBS Access Act, ICFs are “a key component of the national safety net.” The organization pointed out that it is a “fiction” that all community-based settings are better or safer than settings labeled as “institutional.”

“’Community services’ in reality often mean no supervision, no licensing, no consulting medical or nursing personnel, no properly trained staff to handle medical/behavioral crises, high burnout and turnover,” the NCSA stated in its comments. 

Among the many unanswered questions involving the HCBS Access Act are how the federal government would pay the cost of 100% reimbursement of all community-based care.

The NCSA made a number of additional observations about the legislation, including the following:

  • The bill is based on a “false assumption that the Medicaid system contains an ‘institutional bias’ that keeps adults with disabilities locked away from the community at large.

The NCSA noted that the steady closure of ICFs and sheltered workshops around the country in recent years “has already had the devastating impact of depriving individuals of critical options.”  

  •  The bill would only support “supported (integrated or community-based) employment and integrated day services.”

According to the NCSA, the bill “could shutter desperately needed programs serving the severely disabled who are incapable of participating in integrated day services owing to their severe cognitive, behavioral, medical and functional challenges.”

We have been raising these same concerns about the closures of ICFs and sheltered workshops in Massachusetts for many years.

  • The bill overlooks the difficulty of finding housing in the community for persons with autism, and the possibility of eviction for those with dangerous or disruptive behaviors. 

We have also noted the potential for isolation of community-based group home residents whose guardians are perceived as troublesome or meddlesome 

  • The bill would establish an “advisory committee” that would place veto power in the hands of a few advocates. The NCSA stated that “a small, unelected and unaccountable committee would be handed broad discretion to determine what qualifies as HCB services across the country, trumping whatever needs and preferences of severely disabled individuals,”

 As we noted about the Disability Integration Act, this new legislation does not comply with the choice provision in the Olmstead v. L.C. U.S. Supreme Court case. In 1999, the late Justice Ruth Bader Ginsburg, who wrote the majority opinion in Olmstead, endorsed the idea of a continuum of care for the most vulnerable members of our society. Her decision and message were models of inclusivity.

We urge people to email the Senate Special Committee on Aging, as we plan to do, at HCBSComments@aging.senate.gov. Feel free either to paste in this blog post or forward a link to it, along with a short message in opposition to the HCBS Access Act as currently written.

  1. Ann Sanok
    April 19, 2021 at 11:53 am


    Just want to thank you for your advocacy and your blog. This was very helpful to me in crafting an email to Senator Hassan. I live in NH and my 25 year old autistic son is in a group home here. He has many challenges and could never live in an apartment or “community setting”. I also can’t imagine where they are going to find all these apartment and staff!

    You are right that the obsession with “community based programming” is a harmful, misinformed perspective that ends up, ironically, negatively impacting the very persons it professes to help.

    Thank you again – I greatly appreciate your well written, intelligent, analytical pieces. You do a wonderful job and save me much time and research.

    Best regards Ann Sanok Exeter, NH 603-770-7355 annsanok@comcast.net mailto:annsanok@comcast.net .


    Liked by 1 person

    • April 19, 2021 at 3:32 pm

      Thanks, Ann. We appreciate your support. Let us know if you get a reply from Senator Hassan.


  2. Gloria
    April 19, 2021 at 2:10 pm

    I could not have written a better comment than Ann Sanok wrote (April 19, 2021 @ 11:53am). My daughter is 51 years old, and has autistic like tendencies’ and a lot of physical problems through the years, She has a wonderful memory and can communicate, and understands quite a bit, She does have self-injurious behavior when she doesn’t understand what is said or gets frustrated. She has done wonderful through the years at Kelliher (which is now closed) and is in a group home here in MA. COFAR has helped immensely through the years and been there for us and to help our very special people. I can’t believe what they want to do with
    our loved ones with intellectual and developmental disabilities.

    Liked by 2 people

  3. itanzman
    April 19, 2021 at 3:52 pm

    Here is my video on this subject: https://www.youtube.com/watch?v=pKRHGwlXhQU

    Liked by 3 people

    • April 19, 2021 at 5:40 pm

      This is an excellent video, Itanzman. I would encourage everyone to watch it.

      Liked by 2 people

  4. Mary Ulevich
    April 19, 2021 at 5:32 pm

    Thanks Dave,
    I will write to the Senate Committee with excerpts from your blog….pleased to hear the autism group is opposed to the Bill as written
    Mary Ann

    Liked by 2 people

  5. Lynn Ann Royal
    April 20, 2021 at 8:24 am

    Thanks Dave for your continued support and updating of much needed posts.
    I need to ask. Some of us paid dearly for litigation for our loved one to get the services they have a right to under the Olmsted Act of 1999 — and the representatives who we vote into power, feel the need to do so much harm to our loved ones against our wishes. I can’t help but wonder if there might be a potential ‘class action suit’ across states lines against the House and Congress for negligence in failing to thoroughly investigate the pros and cons of such a sweeping act that affects so many families.
    Lynn Royal

    Liked by 1 person

  6. Welcome to Communism
    April 26, 2021 at 3:37 pm

    Decisions about what constitutes appropriate 
    services for developmentally disabled persons belong with appropriately licensed practicioners along with family members, guardians, treating professionals, and others who know the disabled person well–not with government employees, politicians, or government ‘advisory committees’ with no accountability.

    Taking services and placements from profoundly disabled persons is simply wrong. They would never consider doing such for any other group in the population and call it ‘civil rights.’

    For no other group does the government dictate where persons can live and where and what services they can access and call it ‘civil rights.’

    If they are truly sincere about services for the developmentally disabled they need to keep in mind that many persons have medical, behavioral, or other issues that need to be addressed where they live. That means on site nursing, behavior specialists, or other specialized professionals–24-hr on site. 


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