Disability advocacy groups attack our grown children’s viable options, and offer no alternatives. Tell the ACL your severe autism story.
My son with a broken eye socket and 33 stitches, after suffering abuse and neglect in a “community” setting.
By Susan Jennings
The Pennsylvania Council of Developmental Disabilities is ignorant about the realities of the needs of my severely autistic son and thousands like him. It states: “While we do not deny the importance of medical treatment and medical need, we are more sympathetic to understandings of disability as a social construct imposed on people with disability labels rather than as a quality inherent in the person with a disability.”
Our disabled children suffer from devastating neurodevelopmental disorders, not from any "social construct." The PA DD Council calls for the elimination of the only care facilities appropriate for many in the severe population.
Community placements work for some, but in the case of my son it was unmitigated disaster. He suffered for 4 years in 6 different community waiver houses that discharged him into 5 different psychiatric wards. He spent up to 6 months at a time living in the psychiatric ward. He was never more isolated and segregated than in his one-person "group homes.” He was exposed to pornography, suffered a broken eye socket, was toxically overmedicated with powerful psychotropics that made his challenging behaviors worse and left him with horrific side effects, including Serotonin syndrome, disfiguring female breasts, Parkinsonian tremors in his hands, intractable insomnia and psychotic breaks with reality.
The community waiver system is not up to the task of taking care of the profoundly behaviorally challenged and no amount of money can remediate the community system. My son found safety and a quality of life in an intermediate care facility (ICF) with its on-site multi-disciplinary team of professionals and a stable, justly compensated, well trained staff. In addition, the facility has the safety furniture, thick walls and specialized accomodations that waiver housing almost universally lacks.
Joey has found the care and companionship he needs at a Pennsylvania ICF. The state, is threatening to close these desperately needed placements.
The "community" rejects him and without the ICFs, which our state is now threatening to close, thanks to the disability “advocates,” he will end up in jails and/or psychiatric wards. Putting my innocent son and others like him into jail cells for disruptive behaviors is like throwing lambs to the wolves. This is what the disability advocates seem to want for our kids.
The disability landscape has drastically changed over the years. When deinstitutionalization began in the 1960s, the rate of autism was one in 10,000 births, today the rate is one in 59 births, or by the latest numbers, more like 1 in 40. Eighty percent of the present autism caseload is younger than 18, but are coming of age in the next 10 years. Roughly 10-50% of those children will be as severely impacted neurologically as my son as adults. We face a catastrophic shortage of residential services, and the anemic and inadequate "in-home services and supports" are costly, unworkable, and unrealistic for many in this population.
Multiple media exposés and the federal HHS’s own 2018 study finding group home beneficiaries at risk of serious harm reveal that the community waiver housing system is amassing a record of abuse, neglect and death as significant as the psychiatric asylums of a generation ago.
The PA DD Council and others are willing to sacrifice human life on their philosophical altar. The value of congregate care for the severely behaviorally disabled needs to be recognized and have a place in the full continuum of disabilities services.
CALL TO ACTION
Please submit letters to the Administration for Community Living (ACL) by Monday, January 13, 2020 11.59pm EST on the proposed data collection for the Development Disabilities State Plan. Each State Developmental Disabilities Council must prepare and submit, and have in effect, a State Plan — don’t let them continue to neglect the needs of the severely disabled. Fight for the FULL continuum of care. Language from the ACL website is below. Send comments to:
Sara Newell-Perez
Administration for Community Living
Washington, DC 20201, 202-795-7413
sara.newell-perez@acl.hhs.gov
Susan Jennings is the mother and co-guardian of Joey Jennings. She lives in Mansfield, Pennsylvania.
[FROM ACL WEBSITE]
ACL seeks public input on the proposed data collection for the Development Disabilities State Plan in the following:
The State Councils on Developmental Disabilities (Councils) are authorized in Subtitle B, of the Developmental Disabilities Assistance and Bill of Rights Act of 2000 (DD Act), as amended. The Councils are required to submit a five-year State plan, any State desiring to receive assistance under this subtitle shall submit to the Secretary, and obtain approval of, a 5-year strategic State plan under this section. The requirement for a State plan is also further emphasized in the regulations in: (a) In order to receive Federal financial assistance under this subpart, each State Developmental Disabilities Council must prepare and submit to the Secretary, and have in effect, a State Plan which meets the requirements of sections 122 and 124 of the Act and these regulations.
Additionally, data is collected in the State Plan and submitted to Administration on Intellectual and Developmental Disabilities (AIDD) for compliance with the GPRA Modernization Act of 2010 (GPRAMA). In the State Plans, the Councils provide to AIDD future year targets for outcome performance measures. These targets are reported to Congress under GPRAMA.
As required by the statute, the Council is responsible for the development and submission of the State plan, and is then responsible for implementation of the activities described in the plan. Further, the Council updates the Plan annually during the five years. The State plan provides information on individuals with developmental disabilities in the State, and a description of the services available to them and their families. The plan further sets forth the goals and specific objectives to be achieved by the State in pursuing systems change and capacity building in order to more effectively meet the service needs of this population. It describes State priorities, strategies, and actions, and the allocation of funds to meet these goals and objectives.
The State Plan is used in three ways. First, it is used by the individual Council as a planning document to guide it's planning and execution processes. Secondly, it provides a mechanism in the State whereby individual citizens, as well as the State government, are made aware of the goals and objectives of the Council and have an opportunity to provide comments on them during its development. Finally, the State plan provides to the Department a stewardship tool; the staff of the Department provides some technical assistance to Councils and monitor compliance with Subtitle B of the DD Act, as an adjunct to on-site monitoring. The stewardship role of the State plan is useful both for providing technical assistance during the planning process, during the execution process, and also during program site visits.
Documents:
DDC State Plan-Annual Work Plan
Comments on the collection of information must be submitted electronically by 11:59 p.m. (EST) or postmarked by Monday, January 13, 2020.
Submit electronic comments on the collection of information to Sara Newell-Perez. Submit written comments on the collection of information to Administration for Community Living, Washington, DC 20201, Attention: Sara Newell-Perez.