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

KIIDS

$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of autistic young adults leaving high school, who will be denied critically needed services as adults because of an outdated, unrealistic “deinstitutionalization" ideology.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

"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.


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

Petition to Stop HB #1650

Please download, print, sign


TV Broadcasts, News reports, Press Releases