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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.

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.

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 

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

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.

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 

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?

KIIDS
Help Save Our State Centers

Keeping Individuals with Intellectual Disabilities Safe

a grassroots effort

of parents, family & friends

protecting the RIGHTS of our loved ones

to live in the Community THEY need

PENNSYLVANIA CIVIL RIGHTS LAWSUIT - JENNINGS V. WOLF

Chronology of Lawsuit Filings

Filed

01/29/20

Case 3:20-cv-00148-MEM

Filed

08/31/20

Case 3:20-cv-00148-MEM Document 16

10/07/20

Case 3:20-cv-00148-MEM Document 25

In January 2018, a joint report from the Department of Health and Human Services, the Office of Inspector General, the Administration for Community Living, and the Office for Civil Rights issued a report entitled Ensuring Beneficiary Safety in Group Homes through State Implementation of Comprehensive Compliance Oversight.” The “OIG found that health and safety policies and procedures were not being followed. Failure to comply with these policies and procedures left group home beneficiaries [sic] at risk of serious harm. These are not isolated incidents but a systemic problem — 49 States had media reports of health and safety problems in group homes.” But such “systemic” problems in the “community” system do not matter to many advocates; indeed, today’s ICFs are made to pay for the sins of institutional Pennhurst from 40 years ago, but the “Community” system is immune to criticism for its serious systemic shortcomings today.

STOP BLOWING CIVIL RIGHTS SMOKE IN MY EYES - A Parent's Perspective

Our country faces a catastrophic shortage of supports, “activists have doomed many disabled individuals to receive no services at all”

The words “Willowbrook” and “Pennhurst” conjure images of horror in the public mind — visions of naked, vulnerable, disabled people wallowing in their own filth, abused and neglected in large, cavernous warehouses whose very names have become bywords for suffering and human misery. Lest we forget their manifold horrors, we are periodically reminded of Willowbrook and Pennhurst by scolding articles and shocking documentaries, ostensibly meant to ensure that their atrocities are never repeated again. If that were indeed the purpose of the exercise, it would be a good and noble one; but there is a darker agenda at work, hidden from public view, one that — should it succeed — will result in human suffering on an unimaginable scale.

Image for post

 

My severely autistic son had his own horror show, and it began when he aged out of the educational system. He suffered a broken eye socket, was given stitches in the back of his head, was exposed to pornography, was afraid to take off his clothes to shower, was deprived of clean towels and even a bar of soap, and slept on a bare mattress in his dirty street clothes and shoes. He was toxically overmedicated, the side effects of which included the development of Parkinsonian tremors in his hands, disfiguring female breasts, and psychotic breaks with reality from powerful psychotropics administered to him against his will.

 

 

Did this litany of horrors happen to my son in an “institution?” No. All of that suffering took place in the lauded substitute for the “institution” — the privatized, so-called “Home- and Community-Based Setting” (HCBS) waiver services. In his time in the “community,” my son was discharged from six different community group homes administered by three different state providers, who offloaded him into five different psychiatric facilities over the course of four years. His life was a living, ceaseless hell until he was rescued by a dreaded “institution,” the Intermediate Care Facility that finally affords him quality of life and freedom from abuse.

For the last 40 years, there has been a relentless and largely successful campaign to demonize the word “institution,” and ensure that everyone in the world of disability policy mouths the same, simplistic mantra: “Institutions bad, ‘Community’ good.” These activists use the word “institution” to paint all forms of disability service — except, of course, the model of care provided by the one-size-fits-all HCBS waiver — with that same broad brush, in order to condemn and eliminate those models of disability-care that they don’t like. The victims of this propaganda campaign are those with severe autism and profound medical challenges, to say nothing of their desperate and beleaguered families who are left without recourse when their children’s care becomes too difficult to manage.

 

What is the activists’ endgame? The complete and total “deinstitutionalization” of disability services, and the elimination of all out-of-home care for those with developmental disabilities. This assault on structured care for the disabled is being carried out in just the same manner as was the elimination of many congregate-psychiatric setttings for the mentally ill, a policy whose failures are well known to all — homelessness, incarceration, and an endless, traumatizing cycle of suffering for the most severely mentally ill. Deinstitutionalization of the mentally ill was a national disgrace, a pursuit of the so-called “Right to Fail” that, in practice, meant “dying with your rights on.”

 

Willowbrook and Pennhurst were not always “Willowbrook” and “Pennhurst.” They became such “snake pits” as a result of overcrowding, underfunding, mismanagement, and understaffing. Residents were accepted to these facilities who didn’t require intensive care, akin to crowding a cancer ward with flu patients. At one point in Willowbrook’s history, there were 40 residents per one staff member.

 

The Intermediate Care Facility — the model of care my son relies on — was created as a modern disability-service model, meant to replace the “snake-pit” institution. ICFs are heavily regulated by the Centers for Medicare and Medicaid Services (CMS), under Appendix J of the CMS State Operating Manual, a 257-page compendium of rigorous quality standards that an ICF must maintain to receive its legal certification.

ICFs are the superior choice for many of the most profoundly disabled members of our society. The sprawling campuses, open spaces, and on-site clinical staff at an ICF — the array of doctors, nurses, behaviorists, psychologists, psychiatrists, and therapists — have few parallels in the so-called “community.” Campus amenities like pools, camping grounds, and gymnasiums offer safe and therapeutic havens for those with severe autism and medically fragile persons with intellectual disabilities. Additionally, ICF’s are required to provide “active treatment,” an interdisciplinary-mode of care focused on training, therapy and medical care; there is no such requirement for “community-based” services. From highly trained and supervised staff to nurses, supervisors, and clinicians, the ICF has a reservoir of medical expertise that many “community” services lack. When it is open to admissions and filled to appropriate capacity, the ICF takes advantage of economies of scale, allowing the costs associated with caring for the most severely disabled to be shared among a larger pool of residents.

 

But there has been a relentless push for deinstitutionalization by lobbyists and activists, who raise the specter of Willowbrook and Pennhurst whenever questioned about the merits of their goals. Many of these activists are associated with nonprofit groups that own community-based group homes, and as such have a monetary interest in eliminating the competing ICF model of care. As a result of their activism, 92 out of 100 waiver-eligible individuals with disabilities who receive services are receiving those services in a sprawling network of family and group homes in what is called the “community” system. By closing state ICFs to admissions — or eliminating them altogether — activists have doomed many disabled individuals to receive no services at all. At least 12,455 people in Pennsylvania — where admissions are effectively closed to so-called state institutions — are on the waiting list for services.

 

There is no federal Appendix J for Home and Community-based Waiver services (HCBS), the service model the de-institutionalization crusaders substitute for the “institution”. This lack of oversight has real, human consequences.

 

The “Home- and Community-Based” waiver service system is rife with abuse, neglect, and corruption. Dr. David Mandell ScD., Director of the Center for Mental Health Policy and Services Research at the University of Pennsylvania, notes that today’s “media exposés of abuses in community settings rival those of psychiatric hospitals a generation before.” Recent investigations of group homes in New York, Chicago and Philadelphia found rampant abuse and neglect in small, dispersed settings; Mandell notes that these settings “often are not up for the task of caring for individuals with more profound impairments.”

 

In January 2018, a joint report from the Department of Health and Human Services, the Office of Inspector General, the Administration for Community Living, and the Office for Civil Rights issued a report entitled “Ensuring Beneficiary Safety in Group Homes through State Implementation of Comprehensive Compliance Oversight.” The “OIG found that health and safety policies and procedures were not being followed. Failure to comply with these policies and procedures left group home beneficiaries [sic] at risk of serious harm. These are not isolated incidents but a systemic problem — 49 States had media reports of health and safety problems in group homes.” But such “systemic” problems in the “community” system do not matter to many advocates; indeed, today’s ICFs are made to pay for the sins of institutional Pennhurst from 40 years ago, but the “Community” system is immune to criticism for its serious systemic shortcomings today.

 

The closure of our ICF’s are viewed as victories in the fight for ‘disability liberation’ by those who claim to advocate on our loved ones’ behalf. They see themselves as “civil rights heroes,” freeing the disabled from “institutions,” loosing our loved ones from their putative oppression. Families see these advocates as callous and cruel, eliminating appropriate medical care and hard-won quality of life for our loved ones, replacing it with a horror show of inadequate, substandard, hard-to-get, unprofessional assistance and a labyrinthian system of social-services that is impossible to navigate.

 

They insist, as the journalist John Hirschauer once put it, upon “play-acting as Martin Luther King in the sandbox of other peoples’ lives.”

 

So much of the passion and energy from the deinstitutionalization crusaders comes from their strange belief that disabled persons today are being rounded up and forced into institutions en masse. At many state ICFs, admissions are closed or severely restricted. Parents often face near-insurmountable legal challenges if they desire to place their loved one in a state-run ICF; it took us three years and a protracted court battle against the Commonwealth to finally place our son in a state-run ICF. This damaging mythology that disabled persons face the omnipresent specter of forcible institutionalization is false, and is being used by disability-rights advocates to scare the public and force further reductions in institutional capacity. And it is not just “state institutions” that are imperiled by this ideological crusade; ultimately, deinstitutionalization crusaders want to eliminate even the “community” group-homes that they once celebrated, as advocates refer to many group homes as “mini-institutions.”

 

Here is what should really “scare” the public. My son — with his violent and erratic behavioral challenges — is not an anomaly, and he is not alone. According to the National Alliance on Mental Illness, 500,000 autistic adults will be coming of age in the next five to seven years, and between 10% and 50% of those adults will have the similar impairments and behavioral challenges to my son. If deinstitutionalization and the elimination of appropriate residential-care facilities continues unabated, there will be a catastrophic shortage of housing and effective services for these adults. With the CDC recording an autism birthrate of 1 in 54, this is a pressing issue at this time in our nation’s history. Young adults with the most severe challenges will have nowhere to go, save the revolving door of failed “community” placements, retrofitted hospital emergency rooms, psychiatric wards, and jail cells, all at great cost to taxpayers, families and traumatized vulnerable young autistic adults.

For all of the damage wrought on “congregate care settings,” the coronavirus pandemic has laid bare the soft underbelly and systemic shortcomings of the “community-based” service-system. There were always severe shortages of direct-service personnel providing hands-on care in the HCBS system due to the low pay, low professional mobility, and a lack of on-site assistance for medical and behavioral crises, to say nothing of employees’ inability to collectively bargain. With the advent of the coronavirus pandemic, personnel shortages in “community” settings are at an all-time high.

 

In Pennsylvania, where my son and I live, to date, there have only been three cases of asymptomatic coronavirus infection in all four of the State Developmental Centers, or “state institutions,” in which each of the nearly 700 residents have been tested. Compare that to the “community” disability service system in which, as of June 2, there were 801 confirmed cases of residents with coronavirus, and 113 coronavirus deaths. Why the disparity? As Scott Landes, an associate professor of sociology at Syracuse University’s Maxwell School of Citizenship and Public Affairs, indicated, for disabled persons living in a setting with roommates and staff like a group home, they have no place to go if and when the virus enters the premises. With ICFs, by contrast, the spacious campuses and multiple buildings on grounds provide ample opportunity to isolate residents from the virus. Additionally, there is a central location to test incoming staff, and medical personnel available on campus to monitor symptoms.

 

In sum, my son and others like him are lacking a civil right — like a child with cancer has the right to appropriate medical treatment, my son and other developmentally disabled adults like him should have a vital civil right, namely, the right to appropriate long-term care with sufficient medical assistance and supervision like the care found in the ICFs. The fact that there were tragedies at Pennhurst and Willowbrook a half-century ago should not deprive him of that right today.

 

Susan Jennings is a mother based in Pennsylvania. Contact: waitinglistsos@gmail.com.

Website: www.thekiids.org

 

PLEASE DONATE AND HELP SAVE OUR CENTERS

THE BATTLE TO SAVE PENNSYLVANIA STATE CENTERS AS A HEALTHCARE OPTION FOR THE SEVERELY DISABLED

GOVERNOR WOLF AND DHS SECRETARY TERESA MILLER (former ARC lawyer from Oregon) ANNOUNCE CLOSURE OF STATE CENTERS

ACT 3 HEARINGS

Representative R. Lee James at Polk Center Act 3 Hearing

White Haven Families Staff Denounce White Haven Closure

 

RALLIES TO PROTEST CLOSURE

WHITE HAVEN PROTEST

POLK CENTER RALLY - CONGRESSMAN G.T. THOMPSON - 09-02-19

STATE SENATOR JOHN YUDICHAK SPEAKS AT RALLY TO SAVE WHITE HAVEN AND POLK CENTERS

 

SEPTEMBER 24 RALLY AT CAPITOL IN HARRISBURG BY ASFCME AND AFL-CIO

 

 

HEARING HELD BEFORE THE PENNSYLVANIA SENATE HEALTH AND HUMAN SERVICES COMMITTEE ON STATE CENTER CLOSURES CHAIRED BY SENATOR MICHELLE BROOKS - 9-24-19

TESTIMONY OF SUSAN JENNINGS

TESTIMONY OF JOHN HIRSCHAUER, NATIONAL REVIEW JOURNALIST

REPRESENTATIVE GERALD MULLERY ASKS WHAT WAS THE PROCEDURE FOR CLOSING WHITE HAVEN CENTER

HEARING HELD BEFORE THE HOUSE HEALTH COMMITTEE AND HOUSE HUMAN SERVICES COMMITTEE ON STATE CENTER CLOSURES

TESTIMONY OF SUSAN JENNINGS

TESTIMONY OF POLK CENTER PSYCHOLOGIST BILL BAILEY

QUESTIONS BY REPRESENTATIVE TARA TOOHIL

QUESTIONS BY REPRESENTATIVE GERALD MULLERY

 

LEGISLATION ESTABLISHING A MORATORIUM ON CLOSURES OF STATE CENTERS WAS INTRODUCED IN THE PA HOUSE AS HB 1918 AND IN THE SENATE AS SB 906

 

SENATE BILL 906 PASSED THE SENATE BY A 40 TO 9 VOTE - SENATOR JOE SCARNATI, PRESIDENT PRO TEMPORE, REMARKS

ORIGINAL SENATE BILL 906

 

HOUSE BILL #1918 PASSED OUT OF THE HEALTH COMMITTEE ON A 16 TO 8 VOTE AND WAS TABLED BY THE HOUSE SPEAKER

 

THE HOUSE TOOK UP SB #906 - IT PASSED OUT OF THE HEALTH COMMITTEE ON A 13 TO 12 VOTE

COMMITTEE CHAIRMAN KATHY RAPP REMARKS - POSTCARD SHE REFERENCED

SENATE BILL 906 AMENDED BY HOUSE - WAITING LIST PROVISION WAS DROPPED, TIME LIMIT OF 5 YEARS ON MORATORIUM AFTER EVALUATION AND TASK FORCE

SENATE BILL 906 PASSED BY THE HOUSE ON A 139 TO 55 VOTE

SENATE CONCURRED WITH THE HOUSE, AMENDED SB 906 NARROWLY PASSED 28 TO 21

 

SB 906 GOES TO GOVERNOR WOLF WHO VETOES SENATE BILL 906 MORATORIUM ON STATE CENTER CLOSURES ON WEDNESDAY, FEBRUARY 12

 

POLK AND WHITE HAVEN STATE CENTER FAMILIES HOLD A PRESS CONFERENCE TO ANNOUNCE FILING OF A FEDERAL CIVIL RIGHTS LAWSUIT AGAINST GOVERNOR TOM WOLF

Pennsylvania State Senate Hearing on Closure of White Haven and Polk Centers

On September 24, 2019 the Pennsylvania State Senate held hearings to investigate the process that led Governor Tom Wolf and Secretary of Human Services Teresa Miller to declare that the White Haven and Polk Centers would be closed and the residents of those two state-operated facilities would be transferred to community centers or sent to the other end of the state to live in the two remaining state-operated ICFs.

VOR's Susan Jennings testified at the hearing, along with VOR member John Hirschauer and VOR's Executive Director Hugo Dwyer. Several other members of VOR were in attendance, as well. The audience was filled with family members of the residents of the two centers, and a large contingent of caregivers who showed their concern for the residents, for their jobs, and for their community.

A full recording of the hearing may be viewed at https://www.pasenategop.com/blog/092419

While we would encourage our members to view the entire video. Highlights include the testimony of

• James Latronica (5:40 - 10:40)

• Sherri Landis of the ARC (16:15 - 19:30)

• Carl Solano (20:00 - 29:40)

• Q&A of the first panel by Senators (37:00 - 1:05:20)

• VOR's John Hirschauer, Susan Jennings, and Hugo Dwyer (1:06:45 - 1:36:40)

• Staff members, DSPs, and Union Representatives of Polk and White Haven (1:45:00 - 2:04:00)

• Randy Seitz, Chairman of the Penn-Northwest Development Assn. (2:08:00 - 2:14:00)

• Teresa Miller - Secretary of the Dept. of Human Services (and Q&A) (2:18:00 - 3:13:30)

(All times are approximate)

 

One key takeaway from this hearing was the secrecy with which Teresa Miller and Governor Wolf carried out the act of determining whether or not to close any state-operated ICFs, which facilities they might choose and why, and why they refused to consult with any stake-holders in making this rash decision. No residents, family members, facility administrators, caregivers, union members, or community leaders or chambers of commerce of the affected counties and regions were consulted by Wolf or Miller in this process.  

 

SEE NEWS ARTICLES and BROADCASTS at https://www.thekiids.org/newspaper 

Pennsylvania's Facility Closures Hurt the Mentally Disabled

By JOHN HIRSCHAUER

September 26, 2019 6:30 AM

NATIONAL REVIEW

Editor’s Note: The following is a transcript of the author’s testimony at a hearing held by the Pennsylvania state senate’s Health and Human Services Committee. The subject of the hearing was the closure of two state-operated institutions for severely disabled adults.

 

Members of the Committee:

Thank you for the opportunity to testify.

My name is John Hirschauer, and I am a journalist at National Review in Manhattan. My words today are my own.

I have covered state facilities for individuals with intellectual and developmental disabilities on a national level and have worked on behalf of one in the Connecticut state legislature. I still spend much of my weekends volunteering at that facility in my hometown, where I have received the unparalleled gift of interacting with the most profoundly impacted segment of the disability population.

I want to begin my remarks with qualifications that I think are almost too obvious to state but will state anyway, lest I be accused in their absence. First, I, and, I assume, my co-panelists, have no fundamental opposition to people choosing to live in a non-congregated, so-called “community” setting. And for those individuals who have left Polk or White Haven of their own volition, and have found their new arrangements superior, I’m thrilled for them. Sincerely.

 

Indeed, there is one — and only one — side here today that seeks to impose its preferences on unwitting and unwilling parties. And it’s not ours.

 

We are here today for one reason. We are not here because the residents of Polk and White Haven State Centers are being mistreated. We are not here because the residents of Polk and White Haven State Centers are unhappy with their care. We are not here because their families are unsatisfied with the services that their loved ones receive. We are not here because residents have been trapped there against their will, or because they are not given frequent, often desperate offers to leave. No; we are here because the Department, in tandem with a coterie of non-profits and academics, want to close down Polk and White Haven State Centers against the stated preferences of the stakeholders served there.

 

It’s worth pausing to reflect on the tremendous power these triune forces have over the narrative, the narrative that indelibly shapes the way we approach these proposed closures.

 

When state facilities close, who hosts the closure ceremonies? They do. Who warns us, microphone in hand on the lawns of shuttered facilities, not to be “nostalgic,” to think of these facilities as a blight on our history, an embarrassment to the Commonwealth? They do. Who tells, in sordid detail, of the abuses that occurred years ago, and damn every facility for the shameful events at Pennhurst State School in 1968? They do. When instances of abuse come up in group homes or “community” living arrangements, however, who tells us that we must not take that as representative or indicative of the community system at large? They do.

 

When the history of “disability policy” is written, who tells a story devoid of nuance, a Manichean tale where congregation is bad per se and that which they conveniently call the “community” is a good unto itself? They do.

And who is it who calls for these places to close in the first place? They do.

 

But what about the clients at Polk and White Haven State Centers? What about the people who have said they want to stay? What about what they think? Shouldn’t their goals and aspirations matter more than the abstract ideological goals and almost theological aspirations of those who would close their home against their will?

No matter how much families and individuals protest, and no matter how often the Department claims this decision is about “choice,” they know as well as everyone here that to abide by this decision is ultimately to affirm the Department in its fundamental, unavoidably arrogant premise: to assume it knows better than the individuals and families at Polk and White Haven State Centers what is “best” for them.

 

This is an ideological decision. The panel to follow will admit as much; the social science we have available seems to suggest that, for the most profoundly impacted individuals in the disability community, it might actually be slightly cheaper to deliver care in a campus setting than in isolated, dispersed care homes. Their closure literature says as much: Do not focus on cost, they say. This is about, in their words, “civil rights.”

I interviewed the Department for a story I’m writing for our publication, the transcript of which you’ll find in the documents I’ve added to my testimony. I asked them plainly: “Would closure be the right thing to do even if the overwhelming majority of residents and their loved ones opposed it?” The roundabout, implied answer? Yes.

 

The Department stressed to me that this decision was about “choice” for residents and their families — who, it bears remembering, are being displaced from Polk and White Haven against their will; who, it bears remembering, have been assiduously and aggressively given every offer and opportunity to leave if they no longer want to live there; who, it bears remembering, are by necessity among the most profoundly impacted members of the disability population.

 

The Department told me that residents could “choose” one of the state’s two remaining public ICFs [intermediate-care facilities]. I asked the Department, plainly, whether those centers would inevitably be subject to the same closure efforts.

 

Secretary Miller — and I must say, I appreciate her honesty — said, “I mean that’s certainly an option. That’s certainly a potential future.”

 

Is that, in any meaningful sense, a “choice?” No. It’s a dogmatic pronouncement; a religious faith, the sort that seeks to convert by force, to impose itself on people, regardless of their expressed preferences to the contrary. Because, indeed, if the facilities to which these residents move will be subject to this same unpopular ideological action a mere few years hence, what type of “choice” is the Department offering? It is no choice at all. To call it such insults everyone involved, supporters and opponents of this action alike. Let’s call this what it is: the preferences of the Department, the preferences of academics, the preferences of non-profits, working toward that paradisiacal day when no one will live in congregation with his peers; indeed, the preferences of people utterly removed from the actual families who live, and work, and play, and thrive at the state centers finally and completely usurping the preferences of the residents and families themselves.

 

They’ve closed admissions. They’ve shut down facilities by executive order. And they have the audacity to claim that the declining census, a census whose decline is of their making, is evidence that these settings are no longer necessary.

 

So that’s the choice you have. On the one hand, you have the preference of non-profits, who cannot abide the thought that some person with a disability, somewhere in the state of Pennsylvania, lives in brick buildings rather than at the bottom of a lonely cul de sac, the preference of those eager for a symbolic victory, desperate to add a brick from the Polk and White Haven administrative buildings to their morbid collection of trophies, who, to quote Edward Whalen, “are mesmerized by the mystique that all institutions are bad, that the buildings should be razed, the earth bulldozed over and then salt poured on the grounds so it will never rise again.”

What will they say in response?

 

They will express a hollow sympathy for those residents at Polk and White Haven who have expressed a desire to remain, but will insist that “it can only be expected; they don’t know any other way of life.” And when they say that, I want you to think: Has this standard ever been applied in reverse? When residents in a group home, in an independent apartment, or in some alternative habilitative arrangement express satisfaction with their services, do we tell them, “It can only be expected; you don’t know any other way of life”? Do we insist that they have to, against their will and enforced by state armament, leave their current living arrangements, ones with which the have verbally expressed their satisfaction, and live in a congregate setting like White Haven or Polk State Center, and then, and only then, take them at their word that they preferred the group home in the first place?

Of course not.

 

Why is it that we’re told, time and again, by the various non-profits, academics, department officials, and legislators, that we need people with disabilities to be self-advocates, that we should trust their voices, and when those that can open their mouths do so, and tell us what they want, we refuse to accept it?

The panel to follow will also tell you that, while they “understand” that “change is scary,” ultimately most parents and individuals are “happy” after they move. But most of the parents and individuals are “happy” now! And if they’re not, they are given every opportunity to leave! Indeed, this canard comes up time and again. When families and individuals express their overwhelming preference for a state center, it’s demeaned as illogical risk aversion, a pathological “fear of change.” But when a majority of families and individuals subsequently express their satisfaction with private, dispersed care homes in the “community,” this is treated as prima facie sanction to close a state center! When they tell you that many families are satisfied with services in the community — and indeed, I applaud those that are — remember that, in 2011, a survey sanctioned by the Protection and Advocacy Organization — no friend to these facilities and the choices of their residents, as you know — taken in fall of 2011, found that 97.2 percent of the 1,013 families surveyed did not want to move their loved one from the state center where he or she currently lived, and of the 307 residents capable of responding, 271 said they wanted to stay.

 

You can’t have it both ways. Family preferences matter, or they don’t.

They’ll cite their social science conducted by their social scientists, and will cite, no doubt, their favorite study, that found, to no one’s surprise, that the residents who left the notorious Pennhurst State School fared better in the community. That comparison is valid only if you presume that Polk and White Haven are like Pennhurst, which I think is a calumny.

 

And speaking of calumny: The Department said this decision was done to “recognize the worth and inherent dignity of the residents at Polk and White Haven State Centers.” If you think about this remarkable statement for two seconds, you’ll realize what a backhanded indictment this is of the individuals and families who choose Polk and White Haven of their own volition. Do the over 300 families at the centers not “recognize the worth and inherent dignity” of their loved ones, or do the residents not recognize it in themselves? It’s a cheap smear dressed in the language of compassion, which, indeed, is a fairly apt description of this decision in toto.

 

What’s the reality? The reality is this: Some of the most profoundly and grievously impacted members of the disability community reside in the state centers. One Polk resident laments: “I’m going to kill myself.” Another goes to the administration building every day and cries, because he is being forced to move. This cannot be explained away with paternalistic explanations about how it is “all they’ve ever known.” This is their home. They live with their friends. And non-profits with a vested interest in one specific residential-service model, adhering to an ideological framework that trickles through academia, that somehow, because a person lives in congregation with his peers, and lives in a small town, his home is unfit to exist, and needs to be closed against the will of families and individuals served there. One size does not fit all. The most behaviorally and medically impacted individuals in the disability community rely on the safety net provided here. Do not take it away in haste, no matter how badly the panel to follow wants to host another closure ceremony. Thank you.

 

JOHN HIRSCHAUER is a William F. Buckley Jr. Fellow in Political Journalism at National Review Institute. @johnhirschauer

Testimony before the federal Interagency Autism Coordinating Committee during July 23, 2019 Autism Housing Workshop

Here is the Webcast https://videocast.nih.gov/summary.asp?live=33279&bhcp=1/ . It is over 5 hours long. My testimony appears at 1:33 to 1:42

Written Testimony

OPEN THE DOORS TO DIGNITY HEARING

Testimony from parents, friends, experts and advocates on the vital need for a full continuum of residential services for the developmentally disabled before the Pennsylvania House of Representatives Human Services Committee on April 30, 2019

Powerpoint Presentations at Open the Doors to Dignity Hearing
OPEN THE DOORS TO DIGNITY HEARING
Making the Case for a full continuum of residential services for the severely disabled

April 30 Hearing before the Pennsylvania Human Services Committee in the Pennsylvania House of Representatives

Hearing Testimony of the Speakers

KIIDS

Apr 30

Founding Member of KIIDS - Keeping Individuals with Intellectual Disabilities Safe, Board Member and Pennsylvania State Representative of VOR, A Voice of Reason

Kennedy -Krieger Institute

Apr 30

Psychiatrist and Medical Director of the Neurobehavioral Unit of the Kennedy Krieger

Institute in Baltimore, Maryland,

NCSA

Apr 30

President, EASI Foundation: Ending Aggression and Self-Injury in the Developmentally

Disabled, and founding board member of the National Council on Severe Autism

asflutz@easifoundation.org

VOR

Apr 30

Executive Director of VOR, A Voice of Reason, a national organization advocating for a full continuum of residential services for the profoundly and severely disabled

ASA

Oct 10

Past President of the Autism Society of America

White Haven Center

Apr 30

President of the White Haven Center Friends and Family Association

​Polk

Center

Apr 30

President of Polk Center Friends and Family Association

Selinsgrove Center

Apr 30

KIIDS Selinsgrove Center Representative

Ebensburg Center

Apr 30

President of ACE, Ebensburg Center

White Haven Center

Apr 30

KIIDS White Haven Center Representative

$196 Million Increase in Community Group Home Budget decreases Waiting List by only 39 people!

Last Year's state budget took $5 million away from the state centers. The State Center budget went from $137.8 Million to $132.8 Million. At the same time the Community Waiver program increased by $196 Million, from $1.332 Billion to $1.528 Billion. The increase in the funding for the Community Waiver Program exceeded the entire State Center budget (2016-2017 budget) by $58 million.  

 

The totals from the PUNS dated July 31, 2017/data extraction 8/15/2017:

Underserved: 6,371 Un-served: 7,217 Grand Total: 13,588

The totals from the PUNS dated March 31, 2018/data extraction 4/19/2018:

Underserved: 6,360 Unserved: 7,189 Grand Total: 13,549

So a $196 Million increase in the Community Waiver Program Budget decreased the waiting list by 39 people.

Open Letter to the Commonwealth of Pennsylvania

Re: Editorial – Open Letter in Defense of Opening the Doors to the State Developmental Centers for Pennsylvania Citizens

 

This is an open letter to citizens of the Commonwealth, our elected leaders, leaders of faith communities, leaders of the medical community and members of the media. My interest in writing is because of our son Joey, age 27, and because in the coming years, there will be a flood of autistic young adults leaving high school, who will be denied critically needed services as adults because of an outdated, unrealistic “deinstitutionalization" ideology.

 

In July of 2016, at 25 years of age, the youngest of our four children, was admitted to White Haven State Developmental Center, a state- owned and operated licensed intermediate care facility (ICF) offering residential treatment services for individuals unable to care for themselves and whose care is beyond the capacities of their families. There was no question that Joey was eligible for admission. His diagnosis of intellectual disability, autism, and co-morbid psychiatric disorders, our family's struggle to maintain his health and safety at home and his discharge from 3 different community group home systems and 5 different psychiatric wards in the space of only three years made him eligible.

To gain admission for our son at White Haven State Center, we were directed by Joey’s social worker to the Pennsylvania Court system. Joey's admission was opposed by the Commonwealth's Office of Developmental Programs, (ODP), which has a policy of "Closed Admissions" to the State's four ICF programs. Being forced as a matter of policy to go through the court system to gain admission to the services Joey desperately needed cost us thousands of dollars and worry and heartache as Joey languished in the wrong environments, exposed to harm, while battling for a court resolution. This kind of cost would be out of reach for many parents.

 

The policy of “Closed Admissions” was adopted without legislative or public participation. Until our son's severe unmet care needs drove us to seek help, were unaware of the policy - or even the ICF programs. This policy violates the rights of families to make the ICFMR choice of care by making the choice nearly impossible to achieve. This policy also violates the Supreme Court Olmstead tenet, as written by Justice Ruth Ginsberg that, “Each disabled Person is entitled to treatment in the most integrated setting possible for that person – recognizing on a case-by-case basis that setting may be an institution.“

 

 

The policy of “Closed Admissions” is not the only ODP policy which does not reflect the realities of our son with severe autism, who requires eyes - on close care, and others who have slight or no awareness of danger or who are medically fragile individuals with lifelong profound cognitive deficits.

 

The State agency charged with the health and safety of the Commonwealth's at-risk citizens is implementing policies aimed to weaken and dismantle the public ICF programs. The ODP mission is to downsize, consolidate and close our state's facilities for people who cannot care for themselves. Hamburg Center has already been recently dismantled over the objections of the families/guardians and at the very worst time for our disabled population. The waiting list for services grows ever longer (over 13,000) and a whole new generation of autistic young adults with severe behavioral challenges are left to languish in psychiatric wards and even in jails because they have no appropriate place to go and are denied the choice of ICF care.

 

I ask for your help for our at-risk family members with disabilities. Please join with me in preserving the option of state-operated ICF programs – White Haven State Center, Ebensburg State Center, Selinsgrove State Center, and Polk State Center.

For more information, please visit www.theKIIDS.org for Pennsylvania citizens or a nationwide organization battling for the full choice of care for the disabled, VOR (a Voice of Reason) at www.vor.net

 

Sincerely,

Susan Jennings

KIIDS – Keeping Individuals with Intellectual Disabilities Safe

Mansfield, Pennsylvania

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

“Today, media exposés of abuses in community settings rival those of psychiatric hospitals a generation before.” Recent investigations of group homes in New York, Chicago and Philadelphia found rampant abuse and neglect in small, dispersed settings that, as Mandell reports, “often are not up for the task of caring for individuals with more profound impairments.” 

Dr. David Mandell ScD., Director of the Center for Mental Health Policy and Services Research at the University of Pennsylvania

PROGRESS ON THE PETITION TO STOP HB #1650
10,123 Signatures as of August 24, 2018 and more to come!

MANY THANKS TO ALL THE COMPASSIONATE AND CARING PEOPLE OF PENNSYLVANIA!

YOU HAVE STOOD UP AND GIVEN A VOICE TO THOSE WHO HAVE NO VOICE!

Parents and relatives relay the struggles dealing with aggressive, self-injurious behaviors of their loved ones with autism

Authored by Amy Fisher Lutz 

"Couldn't be prouder to be part of this amazing coalition taking the fight for choice to CMS (Centers for Medicare and Medicaid Services). Did you know that the intellectually and developmentally disabled are the ONLY population in this country denied the civil right to choose where and with whom they live?"

"As a member of the House Energy and Commerce Committee, please know that I stand ready to work with you to ensure the HCBS final rule promotes greater choice for individuals with disabilities so that they can reside in the setting that best meets their individual needs."

"In recent years, several cases brought by the Civil Rights Division, specifically the Special Litigation Section, have blatantly disregarded the choice requirements set forth in Olmstead v. L. C., 527 U.S. 581 (1999)."

“To move these aged, medically needy people from the only home they have ever known (the Pennsylvania State Centers), from where they have grown up and lived most of their lives would be a travesty. The transfer trauma of a healthy geriatric person is high; therefore, many of our residents would be receiving a death sentence, and the survivors would spend their last days of their life broken-hearted, missing their lifelong roommates and their caregivers, who have become their family.”

Mr. David Peters,  Nurse and SEIU Hamburg Chapter President, Feb. 3, 2017

Public comments from Kennedy Krieger Institute psychiatrist Dr. Lee Wachtel to the IACC (Interagency Autism Coordination Committee - a federal advisory committee on autism)

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. 

January 17, 2018

 

 

 

SUSAN JENNINGS TESTIMONY at IACC on July 23, 2019

"THE LEAST OF THESE" VIDEO

Click Image for Video

Take a Virtual Tour of a PA State Center

Take a tour of campus living at White Haven State Center and see for yourself all the amenities, campus facilities and the high quality of life White Haven provides for the residents! 

KIIDS

Keeping Individuals with Intellectual Disabilities Safe

a grassroots effort

of parents, family & friends

protecting the RIGHTS of our loved ones

to live in the Community THEY need

We at KIIDS (Keeping Individuals with Intellectual Disabilities Safe) are the parents, family and friends of individuals with intellectual disabilities and dual diagnosis, including autism, living in the Pennsylvania State Developmental Centers.

 

There are four levels of Disability: Mild, Moderate, Severe and Profound.  

 

THERE NEEDS TO BE A RANGE OF SERVICES

High functioning, Mildly and moderately ID individuals can live safely and well in a community group home, but not everyone can.  The developmentally disabled are a diverse group of people and need a diverse range of services from which to choose to meet their needs.

 

Our folks are severely and profoundly disabled, medically fragile and/or behaviorally challenged and their needs are complex.

 

We advocate for the RIGHTS of our loved ones and for all Pennsylvania citizens to be able to CHOOSE the appropriate quality Intermediate Care Facilities that THEY need for their medically and behaviorally challenging and complex disabilities that require intensive support.

 

Disabled citizens are entitled by federal law to appropriate and safe levels of care 24/7. Dually diagnosed individuals present the severest challenge to care providers. This is the exact population that the Pennsylvania State Developmental Centers specialize in. Along with mental impairment, residents are also medically fragile, behaviorally challenged or all three. The behaviorally challenged is a particularly hard clientele for community providers to handle safely. It is where over-medication, abuse and a shifting burden to local emergency responders can often be found. Quality of life and quantity of activity actually drops from what the State Centers provide. It is important to keep Pennsylvania’s State Centers open and funded. 

 

The State Centers work when Community Group Homes fail. Centers have a therapeutic value.  When multiple forms of care are provided in the same building, professionals and caregivers, work together to solve medical and behavioral crises quickly and safely.

 

Generations of justly compensated caregivers have a combined knowledge, experience and intuition that provides a "PERFECT STORM OF CARING" for our severely disabled family members.

 

IT IS JUST TOO EXPENSIVE TO TRY TO DUPLICATE THIS PROFESSIONAL ENVIRONMENT IN COMMUNITY GROUP HOMES.  The compassionate people of Pennsylvania set aside the State Developmental Centers to serve the people who need them.

 

But now House Bill #1650 is being proposed to eliminate all Pennsylvania's State Centers, threaten the homes of our loved ones and take away the only meaningful community they have.  Please help us say NO to HB #1650.

PUT MOST SIMPLY, YOU DON'T ROB PETER TO PAY PAUL, EXPANDING CHOICE (of community group homes) FOR SOME SHOULD NOT COME AT THE EXPENSE OF ELIMINATING CHOICE (Congregate Care Facilities) FOR OTHERS . . .​

-Attorney William Choslovsky

The State Centers Work, When the Community Group Homes Fail

Not everyone can live safely in a community group home, there needs to be more than one type of residential model.  Give every developmentally disabled individual a choice and a range of services and living arrangements.

Joey is a young man with dual diagnosis, autism and intellectual disabilities.  He suffered for 4 years in the Community Group Home Service System, tossed into five different psychiatric wards by three different community group homes businesses unequipped to handle his complex needs, who would then discharge him from their care.   Finally Joey won court battles all the way to the Commonwealth Appeals Court to gain admission to appropriate care in White Haven State Center. Click on his picture to see more details of his journey.

 

No one should ever have to suffer like he did. No one.

 

Now his life, his choices, his home and his future are threatened by HB #1650.

Setting aside for a moment

 parents’ desire to work, care for their own elderly parents, 

or spend time with their other children

 — normal mid-life plans that I suppose ODP considers unnecessary luxuries —

 any plan dependent on the ability of aging parents to provide

round-the-clock care for big, strong adults — often with aggressive, self-injurious or other

dangerous behaviors, such as elopement or property damage — is broken from the start.

Every one of these situations inevitably ends in crisis: the parent dead or physically

incapacitated, and the disabled person — already traumatized from the loss of the only

constant caregiver he or she has ever known — dropped into the first empty bed in the

state, ripped away from everyone and everything that had made life meaningful.

- Amy Lutz, Pres. EASI - Testimony before the PA House Human Services Committee - March 13, 2017

Jimmy, Pictures of a Lifetime

 

It is with great sadness that we must report that Jimmy passed away on December 26, 2017.

But he died in White Haven Center, the home he loved surrounded by the family and people he loved.

Many of the residents of State Centers are elderly and medically fragile.  Jimmy has been a resident of White Haven State Center for 52 years.  He has the intellectual capability of a 16 month old.  He cannot verbally express pain or even blow his own nose.

 

Over the past 52 years, he had a life at White Haven Center that is far superior to what is available to him and others with similar disabilities in the community.  Until he had his stroke, he had the freedom to walk the Center grounds which are quiet and safe from traffic.  

 

Jimmy as well as other residents participate in frequent trips to restaurants, shopping centers, entertainment venues, the local Lions Club chapter events and religious services.

 

Over the years as Jimmy ages his health has declined and in addition to his profound intellectual and seizure disorders, he developed a menu of  geriatric illnesses including arthritis, osteopenia, enlarged prostrate, edema in the legs, hydrocephalus, kidney stones, heart failure and shrinkage in one eyeball.  The stroke he suffered necessitates a mechanical lift to move him from his bed to a wheelchair and specialized equipment for bathing.

 

Now, more than ever, Jimmy needs the 24 hours per day, seven days a week, excellent on-site nursing services, the staff who understand his non-verbal communication, and the companionship of his peers he has come to know and love over the past 52 years at White Haven State Center.

 

See Letter to Representative Benninghoff

What the experts say

... large instit​utions are, in most instances, less expensive than community residences for these challenging populations.

- Schalock and Fredericks

In an unprecedented move, the government is defining where a minority (here, people with developmental disabilities) can live before they can get needed social services, and promoting the idea of maximum quotas of units available to people with developmental disabilities, even in private residences. How would a senior citizen feel if told he could not receive public assistance if the government felt he lived with too many other elderly people? Should we shut off low-income housing vouchers to African Americans if more than 25% of a property is rented to people of color? Are people with Alzheimer's being told they cannot live with "too many" other people with the condition? On top of the bureaucratic shenanigans, we are also talking about rank discrimination.

- Jill Escher, President Autism Society , San Francisco Bay Area

Petition to Stop HB #1650

Please download, print, sign

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