Applause with a Grain of Salt

I applaud community inclusion for all those with disabilities but I have concerns for those with complex needs when I read the proposed changes to Waiver Funding.  As a family member of a son, age 39, who resides in a Passavant group home and works at LARK Enterprises in rural New Castle, PA,  my concern is for his future and the future of all adults with disabilities who have complex needs and, like my son, safety issues.

Even though Jeremy does not communicate well, his non-verbal communication speaks volumes.  He has developed close ties with staff and clients at both settings.  He once typed “make me do things it looks like I don’t want to do”.  In other words, he does enjoy variety in both settings.  At his group home, he is always busy-keeping the house neat, assisting in chores, working in the garden, going out in the  community to restaurants, attending baseball games, shopping, swimming at the YMCA, etc.  He enjoys the different jobs he does at LARK and goes into the community twice a week for a recycling job. Keep in mind that this diversity exists within these confines because he lacks the ability to determine how to stay safe on his own.  He also lacks the ability to express himself-those who know him well understand his non- verbal cues. One of the new standards state that he will need to be spending 75% of his work time in the community by 2019.  Since he lives in a rural area, this could mean that he will be recycling 75% of the time.  There goes the variety that he needs in his life to grow and learn.

For parents, it is the expectation that children will grow up, leave home, and develop a life of their own.  Although these changes provide support to families throughout the lifespan, it appears adult children will be living within the family forever.  Not only is this extremely stressful for all concerned (even though individuals will be offering support), this is not the normal progression of an adult child.  In other words this is not a community inclusive practice.  I have observed that my son has learned different skills from all the people he works with each day-far exceeding my expectations as his mother.  Plus, rarely does the ideal “family” exist anymore.  Life Sharing sounds good but how does a parent tell an adult child he/she can no longer remain at home after he/she has been living there for all of his/her adult life?

Throughout my years as parent, advocate, and social worker, I have observed the swinging of the pendulum from one end to the other on most issues.  I think there is a golden opportunity for many with Intellectual Disabilities and Autism to really grow with these new Waiver changes.  But, we must be realistic-there will always be a need for a continuum of services, especially for those with safety issues and complex needs.  There has never been a “one size fits all” solution.  I know that my son may be deemed the “exception” to some of these changes because he has safety issues.  As a parent, I resent the word “exception”.   Rather, in my estimation, he is exceptional.

This post written by Linda Marino, Special Needs Coordinator for Jewish Family & Children’s Service of Pittsburgh; family member and advocate for 35 years about the Public Comments Period of the Consolidated Waiver and P/FDS Waivers for Appendices A-H

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