Mar 04, 2012 2 Share

Pennsylvania Roadmap


Map of Pennsylvania with I-Phone GPS.
iStockphoto

STOP 1

At Age 16

STOP 2

At Age 17

STOP 3

One Year Before High School Graduation

STOP 4

At Age 21

All Along the Way

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Lisa Smith (not verified)

Forgotten population

I just want to take a moment and speak for the forgotten population.  My beautiful 21 year old daughter happens to be a member.  I scroll through this site and others.  They advocate the road to independent living or living with residential support.  They advocate employment and job training even secondary education.  But what I don't see is a path for the families whose adult child will never meet that lofty goal.  My daughter is one of those adults. We did all that was asked of us. Step by step we filled out forms, went to evaluations, spoke with professionals, registered with MH/MR, met with OVR, sought Guardianship and have an advocate.  We did everything we could have done.  But Graduation came and went. Here we are in a dire situation. You see my daughter isn't capable of being employed.  Her diagnosis is sever ID, sever autism, nonverbal, axiety disorder, self abusive, ADHD, and a host of other comorbidities. We diligently submitted packets to all adult day facilities only to be denied. Why? Because she needs one to one care and that is beyond what they can provide.  We were left with two options. Today we heard from one who told us they will place her on their waiting list but the list is extensive. The other program is in a neighboring state just 25 mnutes from our home but, even if they accept her, we then have to fight for cross state funding.We have been given two options.  In home care which is an unsupervised adult in my home with my nonverbal daughter while I am at work.  The fear of abuse is in the foremost of my thoughts. What are the odds you ask? I don't know but what I do know is that we have been in this situation before and she was abused.  It was caught by multiple third parties who observed the abuse and reported it.  We don't know how long it went on. She was never able to tell us it had even happened. What we do know is that it happened when I was not with her.The other option we have been given? Residential placement.  The quote I took from that meeting, "At least you will be able to work and let the staff figure out what to do with her during the day." My heart is broken.I just want to know where the options for families like mine.  We exist. This is not cookie cutter.  Who helps our kids? Where can they go? Why are there so few options? There doesn't seem to be a place for us to look up Toolkits or Handbooks.  Here is my question that I am putting out to the universe and maybe someday I will get an answer. We know this population exists.  They have IEPs and are given psychological evaluations by our school districts.  We know who theses kids are. The ones OVR can't help. The ones who will forever need a program that makes their day matter. A program that makes them useful, that challenges and inspires them.  We know who they are when we begin the transition process. So here is the question. Why aren't we actively seeking and placing them in a program prior to granduation? Congratulations you have completed your academic life and this is the program you will walk into as school has ended!  Just a thought from a very worn and heart broken mom. 

Thank You

Thank you for taking the time to write such an eloquent comment.