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In opposition of implementing regulations for Section 504 of the Rehabilitation Act of 1973

Families & Friends of Care Facility Residents (FF/CFR)

Arkansas’ Statewide Parent-Guardian Association

Working in support of the vulnerable residents of Arkansas’ Human Development Centers (HDCs)

November 9, 2023


U.S. Department of Health and Human Services,
Office for Civil Rights,
Attention: Disability NPRM, RIN 0945-AA15,
Hubert H. Humphrey Building,
Room 509F
200 Independence Avenue SW
Washington, DC 20201


Re: Proposed new implementing regulations for section 504 of the Rehabilitation Act of 1973


Ladies and Gentlemen:


On behalf of organizations and individuals from fifteen states, I hereby submit our comments in
opposition to the department’s proposed implementing regulations for Section 504 of the
Rehabilitation Act of 1973.


Prior to any advancement of the regulation, we respectfully request a meeting with HHS to
present the concerns we have for our family members with disabilities and others similarly
situated, individuals who may be nonverbal, medically fragile, who live with severe and
profound cognitive impairments, and who will be negatively affected by the proposed changes in
regulations for Section 504.

​

/s/ Carole L. Sherman,
Mother and Guardian of John
Public Affairs Chair, Families & Friends of Care Facility Residents
501-680-5893
carolelsherman@sbcglobal.net

​

Comments in Opposition to proposed new implementing regulations

for Section 504 of the Rehabilitation Act of 1973

​

(1) The proposed rule changes are overly broad and misleading. The changes include multiple
healthcare topics that the public could support, such as access to exam tables and organ
transplants in a 121-page document which also proposes sweeping philosophical changes to
states’ long-term care policies for individuals with intellectual and developmental disabilities,
which we strongly question whether the broader public would support. As concerned guardians,
family members and advocates, we certainly do not.


(2) The proposed rule changes do not reflect the realities and needs of the nation’s population
with severe and profound disabilities, those with complex health conditions, those unable to
speak and who have little or no awareness of danger. One asks, “How did HHS assure that all
citizens who would be affected by the proposed changes were at the policy-making table? Who
were the participants in the rule-making process who represented persons unable to care for
themselves/those who are medically fragile, nonverbal and who cannot self-advocate? Who
were the participants in the process who have had positive experiences with the intermediate care
facility (ICF) program and with the 14-c certificate program?”


3) The proposed rule changes repetitively and inaccurately incorporate the term ”mandate” to
misrepresent the Supreme Court’s decision in Olmstead to promote the dangerous, radical
philosophy of deinstitutionalization of all persons from their safe licensed ICF homes or 14-c
workplaces. There is no “mandate” in law for the deinstitutionalization of persons unable to care
for themselves.


(4) The proposed rule changes repeatedly denigrate licensed facility-based care as being
“segregated.” In fact, thousands have found ICF programs and 14-c programs to be life-saving
and life-giving. Where are their voices in this document? We request specific documentation
about how people living with the most severe disabilities were represented during this process.
Many of these individuals are nonverbal with complex health issues; many have profound

cognitive impairments that make community living dangerous to their health, safety, and well-
being. How – specifically – were these risks weighed during the policy-making process and who

– specifically – represented the interests of our loved ones with these lived experiences?


(5) The proposed rule changes do not reflect the intent of Congress. There were no hearings with
an opportunity for relevant Congressional committees to evaluate the sweeping proposed
changes to Section 504 and to hear from affected families and individuals. Congress has
previously addressed the Olmstead decision and policies of deinstitutionalization in Report
Language in annual appropriations bills for HHS and the Department of Justice (DOJ). See, for
example, appropriations bills for HHS and DOJ, FY 2023:


DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND RELATED AGENCIES
APPROPRIATIONS BILL, 2023:
Page 217


Developmental Disabilities Protection and Advocacy


The Committee notes that the Supreme Court decision in Olmstead v. L.C. (1999) held that the Americans
with Disabilities Act (ADA) does not require removing individuals from institutional settings when they are
unable to handle or benefit from a community-based setting and that the ADA does not require the
imposition of community-based treatment on patients who do not desire it. The Committee notes that
actions to close intermediate care facilities for individuals with intellectual disabilities may impact some
individuals who do not meet the criteria for transfer to a community-based setting. The Committee urges
HHS to ensure that programs properly account for the needs and desires of patients, their families, and
caregivers and the importance of affording patients the proper setting for their care.
 

And:
117TH CONGRESS REPORT HOUSE OF REPRESENTATIVES 2d Session 117–395 COMMERCE, JUSTICE,
SCIENCE, AND RELATED AGENCIES APPROPRIATIONS BILL, 2023:
P. 68


Deinstitutionalization.—
The Committee is aware of concerns about displacement of vulnerable persons from institutional
programs as the result of litigation or the threat of litigation. The Committee also notes that in Olmstead
v. L.C. (1999), a majority of the Supreme Court held that the Americans with Disabilities Act does not
condone or require removing individuals from institutional settings when they are unable to handle or
benefit from a community-based setting, and that Federal law does not require the imposition of
community-based treatment on patients who do not desire it. The Committee is also aware of concerns
that the approach taken by both Federally-supported Developmental Disabilities Assistance and Bill of
Rights Act programs and the DOJ in its related prosecutorial discretion may in some instances adversely
impact individuals who may be unable to handle or benefit from community integration and do not desire
such care. The Committee strongly urges the Department to ensure that the Civil Rights Division properly
accounts for the needs and desires of persons with intellectual and developmental disabilities in licensed
intermediate care facilities, their families, caregivers and legal representatives, and the importance of
affording patients the proper setting for their care, in its enforcement of the Americans with Disabilities
Act and the ‘Olmstead’ decision.


In FY 2023 appropriations bills, Congress directed HHS and DOJ:
“to ensure that programs properly account for the needs and desires of persons with intellectual
and developmental disabilities in licensed intermediate care facilities, their families, caregivers
and legal representatives.”


In proposing to change the Section 504 rules, HHS has not acted as Congress directed.
(6) The proposed rule changes would weaken states’ human service systems. If adopted, the rules
would undermine and eliminate valuable residential services for our neediest and sickest citizens.
They would undermine and eliminate valuable day treatment programs, such as the 14-c
certificate programs. Our country needs a range of programs to address the needs of its citizens
with disabilities. The proposed changes to Section 504 would ultimately eliminate the option of
specialized congregate care facilities (Intermediate Care Facilities - ICFs) for individuals with

cognitive and developmental disabilities and by doing so place in danger current (and future)
residents. The elimination of safe, licensed residential treatment facilities will hobble states’
abilities to properly care for vulnerable citizens, those with complex health conditions/ those who
have slight or little awareness of danger. Nursing homes, jails, group homes, and foster care will
be the dangerous, inappropriate default service system for our family members with life-long
disabilities and peers. The proposed changes to Section 504 would ultimately eliminate the
valuable option of day habilitation settings and 14-c programs, rendering thousands of citizens
living with severe and profound disabilities without opportunities to participate in safe and
productive vocational day habilitation programs. Further, the elimination of day habilitation
programs and 14-c programs would remove critical and irreplaceable opportunities for social
interaction.

​

Conclusion

For the foregoing reasons, and more, the proposed regulations for Section 504 of the
Rehabilitation Act of 1973, as published in the Federal Register on September 14, 2023, should
not be adopted. Prior to any advancement, we request a meeting with HHS. We request a
detailed explanation that addresses how the most severely disabled among us were represented
during the rule-making process and in the development of this HHS policy document. Many
persons with disabilities affected by the proposed rule changes are nonverbal, medically fragile
and have severe and profound cognitive impairments. How – specifically – were these risks
weighed during the policy-making process and what staff or stakeholders – specifically –
represented their interests? Finally, we seek a detailed explanation about how the rule-making
process that led to the proposed changes in Section 504 meets the department’s public
engagement and input process.


November 9, 2023
BY:
Carole L. Sherman
Mother and Guardian of John
(501) 680-5893
carolelsherman@sbcglobal.net


ON BEHALF OF THE INDIVIDUALS AND ORGANIZATIONS LISTED BELOW


ARIZONA
Debora Henretta,
Sister and Guardian of Vincent
Coolidge, Arizona 85238
dhenretta@aol.com


ARKANSAS
Families & Friends of Care Facility Residents
Terry Johnson, President,
Father and Guardian of Danny
Norfork, Arkansas 72658
TerryJohnson7154@gmail.com

​

Teresa Parker,
Grandmother of Elliot
Dover, Arkansas 72837
tlsparker@gmail.com


DELAWARE
Micki Edelsohn,
Mother and Guardian of Robert
Wilmington, Delaware 19807
micki.edelsohn@gmail.com


FLORIDA
Leni & David I. Engels,
Parents and Co-Guardians of Jordy (1982-2005)
Hollywood Florida 33021
desunburst@aol.com


INDIANA
Chyenne Adams,
Niece and Guardian of Terry
Carmel, Indiana 46033
chyenneh@yahoo.com


KANSAS
Kansas Neurological Institute Parent Guardian Group
Joan Kelley, Vice President,
Grandmother and Co-Guardian of Aiden
Gardner, Kansas 66030
farmerjoan@icloud.com


KENTUCKY
Parents, Relatives of Oakwood Facilities (PROOF) Somerset, Ky 42501
Cheri Ellis-Reeves, President,
Sister and Co-Guardian of Ronnie and Patti
Elizabethtown, Kentucky 42701
bcjjj@comcast.net


LOUSIANA
Pinecrest Supports and Services Center Parents Association, Pineville, Louisiana
Terry Lafleur, President,
Dad & Co-Guardian of Jamie
Ville Platte, Louisiana 70586
Lafleur.terry@yahoo.com


MARYLAND
Mark E. Engberg,
Brother of Mary Beth (1968-2004),
Holly Center Advocate & Volunteer
Salisbury, Maryland 21801
mengberg@comcast.net

​

MISSOURI
Bellefontaine Habilitation Center Parents Association
Mary Vitale, President,
Guardian of brother, Jim
Florissant, Missouri 63031
mvitale50@charter.net


NEBRASKA
Families & Friends Beatrice State Developmental Center
Joe Valenti, President,
Father & Co-Guardian of Donald
Omaha, Nebraska 68154
Valentijoe47@gmail.com


OHIO
Harris Capps,
Father and Co-Guardian of Matt
Liberty Township, Ohio 45044
Harriscapps007@gmailcom


TEXAS
Parents and Allies for Remarkable Texans (PART)
Rebecca Japko, President,
Sister and Guardian of Linda
Brenham, Texas 77833
ourparttexas@gmail.com


Family Guardian Association Austin State Supported Living Center
Elisabeth Belile, President,
Legal Guardian/Sister/Advocate for Shanna
Austin, Texas 78724
gynomite2000@yahoo.com


VIRGINIA
Martha S. Bryant,
Mother and Legal Guardian of Taylor
Mother and Legal Guardian of Tyler (1994-2017)

Amherst, Virginia 24521
msbryant724@gmail.com


WISCONSIN
Kevin and Rebecca Underwood,
Parents and Co-Guardians of Aaron
Hartford, Wisconsin 53027
krr.underwood@gmail.com

Integration Question #1 asks whether the definition of “most integrated setting” should be
expanded.

The “most integrated setting” is proposed to be defined as a “setting that provides individuals
with disabilities the opportunity to interact with nondisabled persons to the fullest extent
possible; is located in mainstream society; offers access to community activities and
opportunities at times, frequencies and with persons of an individual’s choosing; and affords
individuals choice in their daily life activities”.


This proposed definition fails to acknowledge the diversity of the disability community which
includes individuals with co-morbidities of profound intellectual disabilities and complex
medical needs who require a higher level of care which includes comprehensive and

synchronized medical care for basic survival in an institutional setting. Non-verbal and non-
mobile and with cognitive functioning of an infant, these individuals depend on others for

every aspect of their daily survival. Making choices in their daily life activities is an
impossibility. Necessary daily care including frequent repositioning to prevent bedsores,
administration of anti-seizure medications, and nutrition via feeding tubes simply cannot be left
up to the choice of the individual in a “mainstream society setting”.


The definition of “most integrated setting” therefore needs to be expanded to include the
holdings of the Olmstead Decision:
“Each disabled person is entitled to treatment in the most integrated setting possible for that
person – recognizing that, on a case-by-case basis, that setting may be in an institution.”
Olmstead v. L. C., 527 U.S. 581, at 605


Limiting “most integrated setting” to only residential settings “located in mainstream society”
misinterprets Olmstead and will lead to reverse discrimination of individuals identified above as
those with co-morbidities of profound intellectual disabilities and complex medical needs. A
narrow definition limiting “most integrated setting” to only “located in mainstream society”
widens the door of USDOJ enhanced Olmstead enforcement and DD Act funded programs
descending on institutional settings to file class action lawsuits “on behalf” of residents claiming
unjustified institutionalization not in the “most integrated setting”.


In closing, the definition of “most integrated setting” should be expanded to protect those
individuals whose disabilities are so severe and profound that they rely on the institutional
option of care for basic survival. Otherwise, the definition does not honor Olmstead’s
recognition of the diversity of need in the disability population.


Thank you for the opportunity to provide comment.

Section 504 proposed rule-making HHS–OCR–2023–0013

Continuum of Care
In order to maximize successful community access, the most vulnerable, high-risk

subset within the DD population often require centralized care. Surrounded by well-
trained, well-paid aides, supported by the on-site professional multi-disciplinary team to

assist with critical episodes - the health, happiness and safety of these adults depends
on this level of 24-7 care.


“It would be unreasonable, it would be a tragic event, then, were the Americans with Disabilities
Act of 1990 (ADA) to be interpreted so that states had some incentive, for fear of litigation, to
drive those in need of medical care and treatment out of appropriate care and into settings with
too little assistance and supervision.” Olmstead, at 610


Regulatory interference
Contrary to statements that the Department has been “consistent with the Supreme
Court!s decision in Olmstead v. L.C.’, the Office of Civil Rights has mischaracterized
Olmstead as a deinstitutionalization mandate, which has resulted in tragic abuse and
deaths in scattered community settings across the country over the last 20 years.
This misuse of authority ignores unique needs for supervision, safety and other care
provisions clarified in the 1999 landmark ruling. Through class action lawsuits, HHS
funded entities have marginalized those who most need oversight and protection, and
violated the civil rights of the weakest among us.


Statements such as “at risk for institutionalization” are discriminatory in nature against
those with the most profound disabilities who are the most difficult to serve.
It ignores community risks of unreported abuse in scattered settings where sparse staff
ratios, inadequate training and oversight are common.


The stated goal is community integration, but more specifically, the actions seek
deinstitutionalization by eliminating a primary form of care, the intermediate care facility
for individuals with intellectual disability (ICFs/IID).


We are keenly aware of improper settings used increasingly around the country,
particularly when Intermediate Care Facilities (ICFs) are downsized and closed.
Time and space does not permit the review of mounting tragedies occurring in scattered
community settings, but surely the Department would agree that retro-fitted Hospital
Emergency Rooms and jails are not a “least restrictive environment.”
Whose civil rights are protected? Whose are being ignored?


“We emphasize that nothing in the ADA or its implementing regulations condones termination of
institutional settings for persons unable to handle or benefit from community settings. . . . Nor is
there any federal requirement that community-based treatment be imposed on patients who do
not desire it.” Olmstead, at 601-602.

​

Costs - Integration ideology turns a blind eye to the high service needs necessary to
protect individuals from abuse and death. It ignores the proven concept of economies of
scale created through shared resources when caring for individuals with complex
needs. Substituting "average costs vs actual cost” of profound disabled individuals
requiring 24-7 care is often deceptively used to sway funds away from care of our most
fragile citizens.


Claims that the DD service system needs to be "rebalanced” and "less reliance on
centralized care” carry falsehood, since only a very small percentage of the I/DD
population currently live in ICF!s across the nation.


The I/DD population is diverse and complex; there is a staggering explosion of
individuals with autism, resulting in dramatic increase in dangerous, behaviorally
challenging population. Allegations that profound autism families are "throwing their
loved ones into isolating, congregate warehouses” are simply not true.


The court held that certain individuals require what is the equivalent medically, to the
ICU level of care, as their conditions are extreme and lifelong. The National Council on
Severe Autism, Together for Choice and other national organizations honor and
recognize this need.


“Some individuals . . . may need institutional care from time to time 'to stabilize acute
psychiatric symptoms!..... For other individuals, no placement outside the institution may ever
be appropriate...for these persons, institutional settings are needed and must remain
available.” • Olmstead v. L. C., 527 U.S. 581, at 604-605

​

Use of term "Integration Mandate” defies Olmstead.
Selective, misrepresentation of the court’s holding is being used to impose ideological
trends through the use of class action lawsuits, timeline transfers, etc. Its discrimination
against profoundly affected DD individuals with the most complex conditions has lead to
an alarming number of community deaths. Olmstead is being twisted to meet
ideological ends rather than address the needs of individuals with the most complex
conditions.


“....the ADA is not reasonably read to impel States to phase out institutions, placing patients in
need of close care at risk . . . "Each disabled person is entitled to treatment in the most integrated
setting possible for that person — recognizing that, on a case-by-case basis, that setting may be
an institution.” Olmstead v. L.C., 527 U.S. 581, 601, 605 (1999)


Georgia - Despite well documented tragedies that resulted in Georgia for example, the
Department of Justice testified before Congress in glowing terms about the settlement!s
implementation, ignoring tragic outcomes and lack of community capacity.


Tom Corwin & Sandy Hodson, "Girls Death Among 500 in One Year in Community Care,” The
Augusta Chronicle, March 29, 2015, http://chronicle.augusta.com/news-metro-health/
2016-10-18/girls-death-among-500-one-year-community-care

​

Use of term “integration mandate” defies DOJ’s own regulations
28 CFR 35.130(e)(1) Nothing in this part shall be construed to require an individual with a
disability to accept an accommodation, aid, service, opportunity, or benefit provided under the
ADA or this part which such individual chooses not to accept.
28 C.F.R § 35.130 public entities are required to ensure that their actions are based on facts
applicable to individuals and not on presumptions as to what a class of individuals with
disabilities can or cannot do.

​

Direct Care Staffing Crisis - Although identified in 2003 by our state’s DD Council, the
community Direct Support Staff crisis has been left unaddressed by community
integration proponents for two decades. Yet most “community only” proponents have
little or no first hand experience in the actual care of profoundly disabled citizens.
Community is in the eye of the beholder. DOJ regulation implemented as forced
acceptance of community placements ignores the spirit intent of the DD Act. It reveals a
blatant disregard for firmly established Federal Medicaid law, and marginalizes majority
and concurring opinions in Olmstead. By ignoring resultant tragic outcomes under DOJ

integration policy, the Department violates the civil rights and the safety of highest at-
risk DD individuals for whom the DOJ claims to advocate.

​

“It would be unreasonable, it would be a tragic event, then, were the Americans with Disabilities
Act of 1990 (ADA) to be interpreted so that States had some incentive, for fear of litigation, to
drive those in need of medical care and treatment out of appropriate care and into settings with
too little assistance and supervision. . . . In light of these concerns, if the principle of liability
announced by the Court is not applied with caution and circumspection, States may be pressured
into attempting compliance on the cheap, placing marginal patients into integrated settings
devoid of the services and attention necessary for their condition.” Olmstead at 604


Conclusion - Ideology which achieves destruction of centralized care settings for
individuals affected with severe and profound disabilities conflicts with the DD Act and
legislative history, which endorses individual choice, and which expressly opposes
closure of residential institutions for persons with developmental disabilities.
DOJ application of ideological policy regulations threaten and interfere with the ability to
access Congressionally-authorized residential and health care accommodations.


Thank for the opportunity to comment.


Joan Kelley, President
Kansas Neurological Institute Parent Guardian Group

Discrimination on the Basis of Disability in Health and Human Service Programs
or Activities
RIN: 0945-AA15
AGENCY: Office for Civil Rights (OCR), Office of the Secretary, HHS.
ACTION: Proposed rule

U.S. Department of Health and Human Services, Office for Civil Rights, Attention: Disability
NPRM, RIN 0945– AA15, Hubert H. Humphrey Building, Room 509F, 200 Independence
Avenue SW, Washington, DC 20201


October 16, 2023


The bias on full display by the authors of this document demonstrates their discriminatory stance against people who are profoundly intellectually disabled. If section 504 of the Rehabilitation Act of 1973 is updated as promoted by these authors, their actions will trample the civil rights of the profoundly intellectually disabled. Section 504 of the Rehabilitation Act of 1973 needs to reflect the reality of profoundly intellectually disabled men and women’s needs for congregate care. No one has the right to restrict those rights and dictate where and how they live.

​

To all who think living in the community is such a joyous thing, I give you Rahm Emanuel, Barak Obama’s chief of staff and former mayor of Chicago who calls people he dislikes "f**king retarded.” ABC News made note in 2010 of his opinionof people with IDD and how pervasive the word retarded is used. 1


Here’s more evidence of life in the community for people with IDD:


In January 2017, Four black people were indicted for hate crimes and kidnapping for their Facebook Live-aired torture of an intellectually disabled white man. 2

​

It's 2023 and the United States of America is violent because of poorly thought-out policies. Ask US congressman Henry Cuellar, who was robbed of his car and possessions at gunpoint on October 2, 2023 one mile from the U.S. Capital. We want our loved ones on a safe campus – not being harmed in the community.


The authors of this proposal to update and amend the section 504 regulation think community life is a happy game of candyland where our loved ones have picnics with the neighbors near their group homes, work at the local restaurants, get married, and have children. That’s mainstream you say, and everyone must have it
because we say so. That’s not possible for men and women with profound intellectual disabilities. The campuses they live on provide the continuum of care they need with safety and dignity. No Rahm Emanuels allowed.

​

You blindly confuse our loved ones with high functioning people who can pack your groceries, act in movies, and serve you food in restaurants. The skill sets of our loved ones are different, and there’s no way
you can fix them. You appear to relish punishing them by closing sheltered workshops. They are
“equitable employment opportunities” for our loved ones.


You persist in closing campuses as if it’s a game and you must reach zero. You dream of crowing, “It took years of hard work but our movement was a success -we’ve closed every institution in the United States of America. Yay us!” What
kind of sick satisfaction do you get from destroying lives as documented in this article: “The Last Institutions.”3

​

Irony: You mislabel congregate care as restrictive and then insist on restricting our children to living the way you dictate.

​

You are not person-centered, you are ideology-centered and it’s tyrannical.


We’ve told you for decades that our loved ones need specialized care. Instead of listening to us, you anticipate our objections and formulate canned answers with the goal of bullying us off our safe, integrated campuses and into dangerously isolated group homes.


Let the men and women who can defend themselves against group home abuses and neglect live in group homes, and stop discriminating against those with permanent brain damage who require the following supports, services, and
continuum of care available on congregate care campuses:

1. 24-hour on-campus nursing staff
2. Occupational and behavior therapy
3. Physical therapy
4. Speech-language therapy
5. Dieticians
6. Dentists
7. On-site wheel chair techs
8. Eye glass and hearing aid repair techs
9. On-site pharmacy
10.Medical doctors and psychiatrists
11.Case Managers who are RNs
12.Walkable “campus-neighborhood” with bicycle trails
13.Gyms
14.Music and art
15. Family and community volunteers who enrich campus life with their skills
16. Sheltered workshops provide the dignity of working for very fragile people
17.Peer-to-peer support

​

Congregate care campuses are the least restrictive for many reasons, sickness is just one. Think back to your last illness and imagine being forced to get dressed, get into a van, and be driven to day-hab where you lie on a makeshift bed, possibly on the floor, listening to deafening music and television and smelling the greasy slabs of cheap bologna so popular for group home meals. Group home customers go to day-hab, no matter what, because owners get reimbursed from the state for those hours away from the house.


If there are parents who are able to provide 24-hour care in their homes – great. But there are other parents who must work outside their homes. They are unable to stay awake 24 hours a day, seven days a week caring for their adult children. Nor are they able to find reliable, properly trained care. They’ve been through the stress of hearing last-minute excuses for why the hired help isn’t going to be coming that day. They don’t like having a parade of strangers in their homes while they’re at work. Some parents are 80+ years old and have been told they have no choice – when they die, their adult children, who have been living with them, are going to a group home.


Some county gatekeepers tell parents new to the biased system you’ve created that their adult children must try and fail three times in group homes before being allowed to live on a campus. The ugly underbelly of this process is the group home owners involved decide that caring for some profoundly intellectually disabled people cuts into their profits, so those potential customers are rejected. The injuries and traumatic stress experienced in those group homes can have long-lasting negative effects and yet you dub it “the right to fail.” You condone preventable deaths and you wonder why families push back.


We are stakeholders but you ignore us, rarely allowing us to serve on task forces or committees. Our loved ones cannot advocate for themselves. It’s fantasy thinking to believe you can cure brain damage. “We can fix that,” say
the protection and advocacy groups. “We can tell by the blinking of their eyes what their passions and goals are. Give your children to us and we’ll make them independent. You don’t know what’s best for your children. We do”! That’s the kind of Alice in Wonderland boasting I’ve heard over the decades. It’s insulting to tell family members that you know more about their loved ones than they do.


You write about “the risk of institutionalization,” but you have no data about the abuse, neglect, and death in group homes. If there are honest brokers among you, let them request group home death data with cause of death, contributing factors, and contact information for next-of-kin. The intellectually curious among you will
compare what the states give you with what medical examiners document. The unbiased among you will contact the next-of-kin to get a full picture of the abuse and neglect their loved ones suffered.


I ask the impossible – that you stop demonizing congregate care. Our childrens’ lives are not your “unfinished business,” and we disagree with your definition of restricted.


After some research, maybe one of you may realize what a mistake it has been to close the campuses nationwide. Olmstead guaranteed choice. Samuel Bagentos knows how many group home deaths occurred in Georgia after he celebrated closing those campuses. Maybe one courageous person among you will visit some campuses, talk to guardians, and work with us to ensure that all of the men and women who are profoundly intellectually disabled, and desire a social life with their specialized health care, get to live on a campus.


Section 504 of the Rehabilitation Act of 1973 needs to reflect the reality of profoundly intellectually disabled men and women’s needs for congregate care. 

​

Our children have a right to life, liberty, and the pursuit of happiness. You do not have a right to restrict those God-given rights and dictate where and how they live.

​

Michele Arnold
12436 FM 1969 #109
Houston, Texas 77065

Cc: The Honorable Ted Cruz

​

1     https://abcnews.go.com/WN/rahm-emanuel-retarded-comment-puts-offensiveness-spotlight/story? 
id=9738134 WASHINGTON, Feb. 3, 2010 ABC News -- White House Chief of Staff Rahm Emanuel's
verbal indiscretion -- referring to some liberal activists as "f**king retarded" -- has shined a spotlight on
just how pervasive the R-word is in American conversation, and how offensive it can be for millions of
Americans.

​

2     https://www.bbc.com/news/world-us-canada-38525549 2

​

3     The Last Institutions | City Journal (city-journal.org) https://www.city-journal.org/article/the-last-institutions 

Parents and Allies for Remarkable Texans
Living at Texas State Supported Living Centers

Integration Question #1 asks whether the definition of “most integrated setting”
should be expanded.


While both Section 504 regulation (45 CFR 84.4(b)(2) and ADA title II (28 CFR
35.130(d) requires recipients (States) to administer programs “in the most integrated setting” the emphasis should always be APPROPRIATE to the needs of the person with a disability. As disability occurs along a spectrum, what is appropriate for one person with minimal challenges is not necessarily appropriate or safe for another person who has intense support needs that must met 24/7.  Often these individuals require a team of professionals to monitor their condition consistently to ensure their quality of life. Just as an ICU department in a hospital monitors critically ill individuals, so also do those individuals with severe Intellectual and Developmental Disorders (IDD) and other co-morbidities, require daily monitoring in an Intermediate Care Facilities (ICF-IID) licensed by the Centers for Medicare and Medicaid (CMS). Those individuals who live in ICFs are protected by the accountability and federal regulations contained in the 247-page Appendix J the federal regulations of the CMS State Operations Manual for ICFs.

​

https://www.cms.gov/regulations-and-guidance/guidance/manuals/downloads/som107ap_j_intermcare.pdf

​

These new proposed Health and Human Services (HHS) Integration rules are being written to provide regulations for States to serve persons with disabilities in the most integrated setting appropriate to the individual. However, the proposed regulations fail to acknowledge the need and right of the most profoundly disabled to receive services in a setting in a licensed ICF-IID facilities which are given the greatest oversight by CMS.


While Olmstead v. L.C., the Supreme Court established that unjustified isolation is a form of discrimination under the title II, it also acknowledged that “nothing in the ADA or its implementing regulations condones termination of institutional settings
for persons unable to handle or benefit from community settings. Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” 

 

I have questions and concerns surrounding these new regulations, that I am hoping you will consider as you decide whether to implement them:
1. DOJ’s Olmstead guidance states “An individual may rely on a variety of forms of evidence to establish that an integrated setting is appropriate. Could the guidance also be used to allow a variety of forms of evidence to establish that a
setting is NOT appropriate? Again, if the public entity's determination of appropriateness is not required to show a community-based setting is appropriate can the inverse be used to show that the community-based setting is INAPPROPRIATE?


2. As a result of Office of Civil Rights efforts, many individuals have transitioned from an institution to the community. Yes, many individuals have been inappropriately placed in a marginally regulated and unsustainable community settings. Does the OCR keep records of the outcomes of individuals who have transitioned from institutional care to the community? Who is making these complaints regarding institutional care? Is it the families of the individuals living in ICFs? Or is it the National and State Protection and Advocacy Organizations? The National State Developmental Disability Councils? UCEDDs? Centers for Independent Living? The Administration Community for Living? It seems there may be an echo chamber where only those opposed to ICF care are given a megaphone to air their grievances while families of those who require the
greatest care are not given a seat at the table.


3. It has been reported by this Echo Chamber that the COVID-19 public health emergency underscored the importance of integration. They report that during the pandemic, institutions had greater instances of COVID infection rates. What
are the statistics of rates of infection and death in each institutional setting? Not just nursing homes. ICFs, State Developmental Centers. Psychiatric Hospitals and Group Homes should be compared and not grouped together.


4. The Department of Justice has made it clear that obligations under Section 504 with providing oversight for those living in licensed facilities. This oversight includes ensuring compliance with the Conditions of Participation and Appendix J to ensure safe and appropriate care for those living in a licensed facility. When the rules under Section 504 undermine safe care, which entity has the jurisdiction to supersede the other agency’s rules? Safe care should always supersede the aspirational mindset of community for all. The Federal Government and States have known for a long time now about the inadequacies
of the HCBS programs.


From the Office of Inspector General Website:
Joint Report: Ensuring Beneficiary Health and Safety in Group Homes ThroughState Implementation of Comprehensive Compliance Oversight.


5. As our government was established to provide citizens with an opportunity to participate in Congressional proceedings, when are families, citizens and State entities going to be given an opportunity in a hearing to testify on these proposed regulations? We must be given an opportunity to voice our objections and concerns to our elected leaders in Washington D.C. These regulations are set forth by an agency under the Executive Branch and not our elected representatives. I ask for an opportunity for those of us concerned about the care given to our most fragile citizens to have a Congressional hearing regarding these proposed regulations.


To quote Justice Kennedy in the Supreme Court decision of Olmstead "It would be unreasonable, it would be a tragic event, then, were the Americans with Disabilities Act of 1990 (ADA) to be interpreted so that States had some incentive, for fear of
litigation, to drive those in need of medical care and treatment out of appropriate care and into settings with too little assistance and supervision."

​

Rebecca Japko
Sister and Guardian of Linda, age 55
President PART (Parents and Allies for Remarkable Texans Living at Texas State
Supported Living Centers)
ourparttexas@gmail.com
ourparttexas.com

 

Letter to Senator Bob Casey regarding the Build Back Better Act

Senator Bob Casey

United States Congress

Washington D.C.

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.

 

Sincerely,

Susan Jennings

Mother/Co-guardian of Joey, White Haven State Center, White Haven, Pennsylvania

Email: waitinglistsos@gmail.com

Phone: 570-447-6330

ICF Advocates for Choice - President

Website:  https://my-icf.org 

Beautiful Linda with her crown!

Click on Arrows to Scroll for more pictures

About ICF Advocates for Choice

We are a national grassroots organization of parents, family members, friends and concerned citizens who advocate and educate to protect, expand, and promote the professional, therapeutic level of ICF (Intermediate Care Facility) Long term Supports and Services in the Disability Service System for the severely and profoundly developmentally disabled. We are ICF Advocates for Choice, Choice without Boundaries and we boldly proclaim the absolute necessity of the ICF level of care required for the health and safety of our medically fragile with IDD and severely behaviorally challenged autistic adult loved ones. While thousands of other special interests and professional lobbyists advocate for the one size-fits-all "Community" only, we are the only national organization that specializes and devotes our time, energy and resources in advocating for those who need the ICF level of care. The "Community" has plenty of supporters, we are here to help the most medically fragile with IDD, the most profoundly autistic and their suffering, beleaguered families, who need a voice more than anyone. 

 

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.

See What People Are Saying

"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."


"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?

 

 

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.

 

The Parents Perspective

Steve Wallace on his 34 year old, severely autistic son Justin

Austin State Supported Living Center

Susan Jennings on the Housing Needs for her severely autistic 29 year old son, Joey


 

It's Time for Accountability for the DD Act Programs - Protection & Advocacy Transparency Amendment

The Developmental Disabilities and Bill of Rights Act of 1975 (DD Act), which is administered by Administration for Community Living (ACL), created four programs  -DD Act programs include: (1) Protection and Advocacy System for Persons with Developmental Disabilities (PADD), (2) State Councils on Developmental Disabilities (CDD), (3) University Centers for Excellence in Developmental Disabilities (UCEDD) and (4) Projects of National Significance (PNS). DD Act programs operate in every state.  The DD Act and its programs were last reauthorized for a period of seven (7) years in 2000 (Public Law 106-402- October 30, 2000).

 

The Administration for Community Living (ACL) uses its resources and allows the DD Act programs to undermine and eliminate the Medicaid intermediate care program (ICF) for persons with intellectual and developmental disabilities (ICF/I-DD).   Our loved ones, who are medically complex and behaviorally challenged require intensive supports and 24-hour nursing care and close supervision, but ACL – an agency of Health & Human Services—is effectively working to remove vitally needed health care from our medically and neurologically complex individuals.

ACL permits the DD Act Protection and Advocacy Systems for Persons with Developmental Disabilities (PADD) to initiate class action lawsuits sweeping thousands of at-risk persons into litigation that is directly counter to their health, safety and welfare. ACL approves such “systemic litigation” as an “intervention strategy.” It is wrong to use our own tax dollars to force innocent individuals into federal litigation that seeks to undermine their own health care and residential supports against the will of their loving families and guardians.  

 

The ACL and its programs work to eliminate the model of healthcare and residential supports which families know is vitally required for our at-risk loved ones and they ignore key provisions in the DD Act which support the role of families as primary decision-makers for services and supports for their family members with disabilities. 

The ACL ignores the following key provision:

(c) POLICY

It is the policy of the United States that all programs, projects, and activities receiving assistance under this title shall be carried out in a manner consistent with the principles that

. . .

(3) individuals with developmental disabilities and their families are the primary decision makers regarding the services and supports such individuals and their families receive, including regarding choosing where the individuals live from available options, and play decision-making roles in policies and programs that affect the lives of such individuals and their families;

Title I, Sec.101

Public Law 106-402 Developmental Disabilities Assistance and Bill of Rights Act of 2000.

Protection & Advocacy Transparency Amendment

At long last, a courageous Ohio Senator, concerned by reports from families that Disability Rights Ohio was speaking to family members without the guardians present has  added an amendment (SC 3841 - Omnibus Oversight Language) to the state budget that calls for oversight of DRO.  This bill creates an oversight committee on DRO actions.

 

"Sec. 5123.603. (A) Every two years, the president of the

6 senate and speaker of the house of representative shall

7 establish a joint committee to examine the activities of the

8 state's protection and advocacy system and client assistance

9 program.

 

 

 

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