More Stories: How Bad Must It Get?

Dee Coccia, co-executive director of Vision For Equality Inc., during an interview last year on WHYY's "Radio Times." (Photo courtesy of Radio Times with Marty Moss-Coane/WHYY).

My column on Thursday, 3/22, allowed Dee Coccia to tell stories of how the state's already miserable supports for adults with disabilites is impacting vulnerable lives in Pennsylvania. Below are additional stories Dee has heard, in her capacity as co-executive director of Vision For Equality Inc. Space constraints kept me from including them in my column, so I am running them here because these tales need to be heard.

Some of them are written in the first person, culled from letters Dee has received. Others are in the third person, written by advocates for the disabled folks/families whose stories are chronicled.

How I wish Dee were making them up.

 Mary’s Story

A 38-year-old woman with a profound intellectual disability was found with her deceased mother.  After a period of two days, the young woman was discovered and taken to the hospital where she remains since no family members are able to care for her.  There  is no money through the City to support her so she remains in the hospital costing tax payers thousands of dollars a day to keep her there.

 Stephen’s Story

My brother Stephen has an intellectual disability and attends a workshop in Philadelphia.  He has been working there very successfully since he was 22 years old.  He is now 55.  He lives with my 86-year-old mother but time is running out.  When her health declines or she passes away, Stephen is supposed to be placed in a group home.  If funds are cut this will not be able to happen, and Stephen is far from belonging in an institution. A  cut in funds is not the reason to send people to an institution.  My family and I have always impressed upon Stephen the importance of being independent, and he is so proud to be working. He used to attend socials every Tuesday evening and every other Saturday, but funds were cut and he no longer could attend these socials because of lack of transportation.  My mom is not in shape to transport Stephen back and forth at 86 years old.

Stephen is a beautiful human being and deserves to be provided with a safe and enjoyable place so he can get the best life has to offer. To place Stephen anywhere but in a nice group home would be a crime and world sadden us and Stephen immensely.  Please do not let this happen! DO NOT CUT FUNDS THAT THESE PEOPLE SO DESPARATELY NEED

 Lisa’s Story

Our daughter has had a developmental disability since birth.  We hope that the base money funding stream is not cut, because that is the only funds she gets through her Supports Coordination Agency.  Over the years the amount of money she received from state base funds has been far less than what she has had to spend for “community activities and recreation” with her social group.  This group allows her to grow independently and maintain a feeling of normalcy, which everyone needs to feel like an “OK person.”  People with any kind of disability suffer from being “under the microscope” all their lives.

We hope our daughter can eventually receive waiver funding, so that she can have the support she needs to maintain herself out in the community.

As caregivers, we are worried about what her future and our future will hold.  We are aging parents (78 and 77 years old).  Both of us suffer from hypertension and have heart conditions (triple bypass and a stent), and live with the stress of taking care of our daughter every day.  We worry that without some respite we may need social services ourselves.

Our daughter has been unemployed for the last five years, after having an excellent job at the IRS for twelve years.  She was let go because her department was closed and the IRS moved to another location.

Our daughter needs funds to support her so that she can continue to work towards her independence.  We as caregivers need the financial support so that we can get the financial and emotional relief from the stress of daily care as we ourselves may need help from social services.

 Joan’s Story

A mom in Northeast Philadelphia was the sole support for her daughter who has intellectual and physical disabilities.  Not being able to get help in desperation, Joan’s mother attempted to take her life thinking if she was dead, her daughter Joan would then get services.  The police found Joan’s mother and took her to the hospital.  The City was notified but, because there are no funds to care for Joan, she too was placed in the hospital costing thousands of dollars to keep her there and at the tax payers expense.  Joan’s mother is now recovered.  Joan remains unserved.

Jasper’s Story

I live in Philadelphia with my son and my 50-year-old brother who has intellectual disabilities.  I am my brother’s sole caregiver.  He cannot be left at home unattended since he needs help with most of his daily living skills.

My brother needs a day program.  He is very mild-mannered and shy.  He has no friends and needs to socialize, like everyone else.  He is regressing rapidly and, due to boredom, is displaying mood swings.

Currently, I am unable to work because I am my brother’s only support.  My financial situation is extremely difficult and I need to return to work but there is no one to help care for my sibling.  He did receive a small amount of support in state base funding but that did not offer enough to care for him so I can go back to work.

I understand that with the proposed budget by the Governor, my brother would have his base funding cut entirely and there would be little or no hope that he would ever get a day program.  However, I understand that living in an institution would be an option.  Institutionalization is ABSOLUTELY NOT an option!  I can not even understand how spending more than $250,000 per year can be his only option when for about $30,000 he could have the day program he needs and still be able to be part of his family and his community.

My brother and I are very close.  He counts on me for everything.  I am only asking for a little help so I can keep him with me (at a considerable savings to the State) where he is loved and cherished.  Please consider the consequences of separating my brother and others like him from their families and communities when you are making your decisions.

 Ayanna’s Story

I am the mother of a special needs daughter who is 26 years old and is on the waiting list for services.  We have been waiting for at least two years for a day program.  Since we don’t have supports, such as a waiver to fund the day program, our day is full of supports that I  provide such as walking at the mall or track, supermarket shopping, library, walking in the neighborhood, day trips, etc.  But what my daughter is missing most is interacting with her peers, socialization, bonding friendships, doing tasks with others.  She does receive FDSS and if this is taken away, how will I be able to pay for her activities?  I do not work because of her needs.

My daughter needs help in dressing.  I take care of her diabetic needs because she can not.  She does not have stranger awareness.  She can not cross the street alone.  She does not recognize danger.  She needs activities daily.  It would be a big help if she had the waiver for a day program, even for my sake.  It would give me time to work and will help my daughter not to depend on me as much.  Her doctor just helped us change her insulin at lunch, where none is given and there is no need for finger counts because she has a monitor that will beep if she is too low with her sugar count so staff will only have to give orange juice and a snack.

Please consider our needs.  Our daughter is happy at home with her family and to have her in an institution is totally out of the question.  The community is where she can blossom and learn what life is all about.  I pray that you be mindful of our needs and give funding for day programs.  Even though on the ISP there is a request for a needed day program, this need has not been met.   A provider has stated they would accept her in their program but they are waiting for the waiver to go through.