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Autism Taskforce Pa Facts System v. Community

The State of Pennsylvania For
People With Disabilities

Over 1 million people with severe disabilities in Pennsylvania receive no support or services. This is not a Down syndrome issue, a cerebral palsy issue, an autism issue, a mental retardation issue, a mental health issue, a brain or spinal injury issue, an aging issue, or even just a disability issue. This is an issue that affects all Pennsylvanians. It affects our families, our children, our neighbors, friends, co-workers, classmates and loved ones. Almost 100% of people at some time in their lives will know and care about a person who has a disability. 50% of all people will have a disability themselves at some time in their life. Pennsylvania needs to start putting its citizens first!

Pa use to be a forerunner in meeting the needs of people with disabilities, and now ranks among the lowest in meeting people's needs. The facts below speak for themselves, most were taken directly from Pa's state website in 2003. Many people believe that because some agencies and services exist for certain "categories" of people with disabilities, that all people with disabilities are well served. Reality is... even those that meet existing criteria for support are unsupported, on waiting lists or receiving poor supports, and most just don't qualify.

   2,348,555 People With Disabilities In PA 1 

People With "Severe" Disabilities

1,211,555   People With Severe Disabilities 1
     74,000   People served by MH/MR (Mental Health/Mental Retardation) 2
1,137,555    People with severe disabilities "not" served by MH/MR 
4,012   Infants, Toddlers & Families Waiver (up to age 3 with MR or other related conditions) 3
  Attendant Care Waiver (age 18-59) Act 150 state funded program 4
Attendant Care Waiver
(age 18-59) Medicaid Waiver 4
 190   Independence Waiver (over age 18) 3
    (Physical disability and/or chronic conditions Other dev. disabilities - CP, autism, epilepsy, Brain injury) 5
294   OBRA Waiver (to avoid nursing facility) 3
(Physical disability and/or chronic conditions Other dev. disabilities - CP, autism, epilepsy, Brain injury) 6
50   Michael Dallas Waiver (Technology Dependent) 3
63   Aids Waiver 3
         6,254   PDA Depart. of Aging Waiver (over age 60) 3
1,123,333   People with severe disabilities "not" served by MH/MR or other waivers
    Medical Access Card (Under age 21 - medically necessary services & equipment) 7 & 8
(Severe Disability, Mental Illness or Behavioral Disorder - parents income not counted)
    Special Education Services (All children with disabilities, when appropriate to age 21)
(may also qualify for one-to-one support services at home and school, based on medical need)
    COMMCARE Waiver (over age 21 - New April 2002 ) 9
(To prevent institutionalization of individuals with traumatic brain injury)
350,000    Individuals with Mental Retardation (MR) in PA 10
     74,000    People served by MH/MR 2
(3,000)   Personal/Family Directed Support Waiver (over age 3 with MR only) 3
  (14,551)   Consolidated Waiver for Individuals with Mental Retardation (over age 3 with MR) 3
  276,000   People with Mental Retardation "not" served by MH/MR 
People "waiting" for Mental Retardation Services   
23,753   Total people identified on waiting list 11 
1,563   Persons in "emergency" category needing services immediately 11 
6,747   Persons in "critical" category requiring services within one year 11

(compare to what MH/MR says that it does


Other info

204,219   People having difficulty with self-care in PA 1
82,670   Use a wheelchair in PA 1
10%   Population estimated to have sensory integration dysfunction 12
70%   of children with learning difficulties have sensory integrative problems 12 
14.8%   Dropout rate for Youth with Disabilities 13
71%   Unemployment Rate for Adults with Disabilities (72% would prefer to work) 13
80%   of long term care is provided in the home by friends/family members for no payment14  

Children with Disabilities in PA Ages 6-21

219,377   Children with Disabilities in PA Ages 6-21 - Under IDEA, Part B 15
122,386   Specific Learning Disabilities
36,022   Speech or Language Impairments
27,052   Mental Retardation
19,864   Emotional Disturbance
1,986   Multiple Disabilities
2,648   Hearing Impairments
1,263   Orthopedic Impairments
2,203   Other Health Impairments
1,152   Visual Impairments
 3,304   Autism
41   Deaf-Blindness
1,456   Traumatic Brain Injury
 0   Developmental Delay (children ages 3-9)

Shortage and high turnover of professionals threatens quality and continuity of services. "For the 25,000 Pennsylvanians who now receive residential MH/MR services in the community (18,000 in MR and 7,000 in MH), inadequate reimbursement leads to low employee compensation and high turnover".16 "The shortage and turnover of direct care/support professionals in mental health and mental retardation community programs threatens the quality and continuity of services to over 250,000 Pennsylvanians".17

Only six states in the U.S. have a state agency serving only persons with mental retardation

PA's adult system doesn't recognize developmental disabilities
It does not recognize a variety of neurological disorders, cerebral palsy, brain injuries, autism and other disabilities which occur before the age of 22.
A person with a developmental disability will have substantial functional limitations in three or more areas of major life activities: self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living and economic self-sufficiency.18 Pennsylvania is one of six remaining states that provides a system only for MH/MR. It serves only children and adults with IQ's under 70 or who are diagnosed with mental health conditions. People with other severe disabilities do not qualify under MH/MR regardless of the level of functioning. 

Personal Assistant Services (PAS) in Pennsylvania - "These waivers target specific types of disability, age groups and support services needed. Moreover they join a hodgepodge of other age limited, disability specific and diagnosis driven support service programs that contain little or no recipient control. Those with sensory, cognitive, multiple or more severe disabilities are the least likely to find a level of PAS assistance that meets their specific needs or desires. Eligibility, for PAS programs, is needlessly dependent upon factors such as age, diagnosis, arbitrary measures of mental acuity, disability type, economic status, varying assessment standards, and most notably, state system infrastructure needs".19

Financial Pressure towards inadequate and inappropriate interventions. "There are pressures from funders to discontinue or scale back services too soon because an individual is either progressing too fast, or not progressing fast enough. The re-evaluation every four months of a chronic, life-long condition, like Autism related disorders, is needlessly costly and adversarial."20

Pennsylvania is not in compliance with any of the Individual's with Disabilities Education Act, a federal law. Non-compliance issues identified by OSEP Statewide Monitoring  for children with disabilities in Pennsylvania 21:

  •  Exclusion from the regular educational environment 
  •  Inadequate supply of qualified special education and related services personnel, resulting in inappropriate and untimely evaluations and services .
  •  Extended school year services not provided.
  •  Psychological counseling not provided .
  •  Children with disabilities not being assessed.
  •  Participation in assessments based on disability (Instead of unique needs).
  •  IEP's not identifying the initiation, duration, frequency and location of services and modifications provided.
  •  IEP's lacking appropriate transition services statements addressing needs, interests and abilities to facilitate a studentís transition from high school into an appropriate post-secondary situation, and for students 14 (or younger, if appropriate) a statement that focuses on the studentís courses of study.
  •  IEP notification and invitation not meeting IDEA requirements regarding transition.
  •  Policies and procedures of the charter schools related to special education not on file
  •  Did not ensure that the requirement for consent to transfer records does not result in a failure to provide a child with a free appropriate public education

Although there has been a push for improved services for select populations based on disability labels, the state has failed to properly implement the law. Most students with all types disabilities do not receive an appropriate education or appropriate supports and services. There a statewide system of consultants specifically for autism that provides customized local, regional and state trainings, along with a framework for designing and implementing individualized program plans linked to ongoing assessments of the individuals' strengths. 

HMO's for Medicaid Payments Children with Spina Bifida may not be able to get reimbursed for visits to emergency departments or may not be able to receive medical equipment or supplies when managed care HMO's are used to oversee Medicaid payments. Children with spina bidifa often do not fit into the standard medical categories that these organizations use to contain costs.22  For other children with Autism and similar developmental and behavioral needs "Managed Care organizations, in the absence of clear guidelines by DPW, often try to deny coverage for supports, claiming that the services are educational, or for physical health."23

79,000 Pennsylvanians that do not need hospitalization are placed in facilities 1,700 licensed personal care homes/assisted living facilities. These facilities house over 79,000 residential beds for people who are elderly or who have disabilities and require assistance beyond the basic necessities of food and shelter but who do not need hospitalization or the services of a nursing care facility. Not including listings of other types of residential health care facilities licensed by the Commonwealth of Pennsylvania or commercial "boarding homes", nursing Care facilities, rehabilitation facilities/units, domiciliary care homes, facilities licensed by the Office of Mental Health and Substance Abuse Services or the Office of Mental Retardation, or those that serve less than 4 persons. 24  Very little funding is provided to support people to remain in their homes and community, or to assist families that provide support. Often the only way to get assistance it to be placed at a great cost into a facility.

  What Do People With Disabilities in PA Need?  
A Developmental Disabilities state focusing on meeting individual's needs, based on the needs and not labels. Provide life-long supports, services and interventions tailored to the individual for "all" people with life-long disabilities   -- including education, employment and housing for adults. Perform a statewide assessment to identify the types of resources and programs needed to support all people with disabilities. Design a centralized system that provides unfragmented services with consistent quality and availability statewide. Ensure that support personnel and providers are educated and trained on the unique specific needs of the individuals they serve. Eliminate waiting list and shortages of social skills support and school based programs. Design and improve the quality of Behavioral Health Rehabilitation Services (BHRS) so the services follow the person, are individualized, and are provided by trained and qualified personnel. Adapt the school system to coordinate and cooperate with other agencies, behavioral support staff, and clinical personnel to provide a multidisciplinary and integrated approach for educational, behavioral and support services. Pennsylvanians need to be supported in their homes, schools and communities. We need to move away from an institutional bias and support and respect all our citizens as valuable human beings.

1 U.S Census (2000) 

2 Pennsylvania's Department of Welfare 
3 Office of Medical Assistance Programs - Statistical Report Fiscal Year 1999-2000 
4 Office of Social Programs (OSP) Dec 2000 
5 World Institute on Disability 1999 Survey of Publicly Funded PAS programs 
6 World Institute on Disability 1999 Survey of Publicly Funded PAS programs  
7 Getting Medical Assistance for a Child Under 21 with a Severe Disability, Mental Illness or Behavioral Disorder Under the "Loophole" 
8  Why Is Medicaid So Important? Carole W. Soskis, Dec. 2001, ARC Community Trust of Pa 

10 The Arc of Pennsylvania Emergency Resolution, June 23, 2003
Survey April 2000, Temple Institute on Disabilities
12 Book: What Exactly Is Sensory Integration Dysfunction?, Author: Olga Bogdashina,: March 1, 2003
13 According to the National Organization on Disability/Harris 1998 Survey of Americans with Disabilities
14 Long Term Care, PA Depart. of Aging, Facts About Care & Services in PA|5345|&longtermcareNav=| 
15  Data based on the December 1, 2000 count 
17 MH/MR Coalition 
18 Oklahoma Developmental Disabilities Services Division 
19 Community Forum Findings on Personal Assistance in PA, Pennsylvania Council on Independent Living.

20 OSEP Statewide Monitoring  for children with disabilities in PA, February 1, 2002 
21 Non-compliance 
23 DPW Report statewide public meetings 2002 - Early Intensive Behavioral Intervention Services for Children with Autism Related Disorders

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