Individuals with Intellectual Disabilities are Held Back by the System

PHILADELPHIA - May 3, 2013 - PRLog -- Over 15,000 people with Intellectual Disabilities and Autism are waiting for services and support in Pennsylvania. Over 4,000 of the individuals are in emergency situations. The Office of Developmental Programs defines the emergency category as “individuals needing services within six months”, yet many are allowed to languish for years.

One of the family members testifying at the hearing is Suzy Bergman. Her son Aaron has been on the waiting list for over 6 years. “The financial difficulties have been tremendous, says Mrs. Bergman. I had to resign from my place of employment to stay home to take care of Aaron.  After 19 years, this family is finally starting to break.  Aaron is sitting in a hospital, losing all of the skills I have spent years maintaining, waiting for a home.  It’s terrible, we have spent all these years trying to make this child’s life all it could be and now we’ve ended up here. Punished for not having him in the system, for not using the system for all it’s worth, for not institutionalizing him.  Now that we need the help, we are being refused it.  Shame on this system of ours for being so broken.”

Families are the backbone of the system, more than 75% of people with disabilities continues to live at home after graduating at age 21.  Keeping and supporting families at home is not a top priority by the Government according to Sheila Stasko, manager of the Pennsylvania Waiting List. She is hoping this hearing will change that.

Kathy Ross, another mother who is testifying on May 8th, has twin sons; Michael and Christopher. They have Down Syndrome and are turning 21 next month. Kathy is concerned the proposed budget will bring the services they receive to a complete halt.  “There will be no funds for them to have a supervised and or sheltered work environment.  My son's and countless others like them, will be subjected to becoming couch potatoes at home because, although protected by rights and laws written for the education of the children, the same is nonexistent for those 21 and older.  All of the intensive effort in training and education for the child will be lost if there is no funds for the adult's ongoing stimulation development. Who will supervise them?  Which parent will have to quit their job to stay home with their 21 year old or older child?  This isn't only about the financial burden on the parents, it's about the throwing out of all the previous development and growth our laws did for our society's most vulnerable and needy while under 21, now saying we no longer care and will not assist them throughout adulthood.”

The purpose of the hearing on May 8, 2013 is two fold.  One, to bring light to the issues regarding services for people with Intellectual Disabilities and Autism. Second to enable Vision for Equality and PA Waiting List Campaign to discuss and educate the house members on the importance of committing to a five year plan to en the Waiting List for people with Intellectual Disabilities and Autism.  

The Hearing is taking place in at 9 a.m. in room G50, Irvis Office. The Press Conference is taking place at 11 a.m. in the Media Center, families from across the state will attend.
For more information about the hearing contact Karin Annerhed-Harris, kannerhed-harris@visionforequality.org phone: 267-702-1602.