Special Needs: Transition Planning

Transition:  Planning For the Future

by Linda Jorgensen

What do you want to be when you grow up?  Most children begin seriously thinking about what they would like to be when they grow up while still in their early teens.  It is no different for a child with disabilities.  However, children needing extra help and services find that once they graduate from the education system the programs and supports they need change or often disappear altogether.  Given the changes currently occurring nationwide, it is imperative for parents to actively begin thinking about the transition process and what programs and services their child may need well before he/she graduates from the education system.   

Entrepreneur with Special Needs

I first heard about Barb from some locals on Pine Island.   Barb owns and operates a produce stand on Pine Island in Florida. Barb and her family moved to Pine Island from New York several years ago.  I was told Barb has Down syndrome, after meeting her I doubt that is the case, although she does have some sort of cognitive disability. I find her entrepreneurial story fascinating and unfortunately rare.

I write this post in hopes that many other people with disabilities will have the chance to create a life for themselves as Barb has done.  Undoubtedly Barb has had help but as Goethe says, ‘Act boldly and mighty forces will come to your aid.’

Barb agreed to photos and an interview, here is her story:

Katie Bekett - Independent Living

It started with a 3-year-old girl in a hospital and the president who was angered when he learned that federal rules prevented her from going home.

By what sense do we have a regulation in government that says we'll pay $6,000 a month to keep someone in a hospital that we believe would be better off at home, but the family cannot afford one-sixth that amount to keep them at home?

- President Ronald Reagan, Nov. 10, 1981

The president was Ronald Reagan. The girl, Katie Beckett, had contracted viral encephalitis, a brain infection, when she was just five months old. She'd gone into a coma for ten days, and when she came out she suffered a paralysis that left her unable to breathe without the help of a ventilator most of the day.

After more than two years living in St. Luke's Methodist Hospital in Cedar Rapids, Iowa, the family reached the limit of what its private insurance would pay for Katie's care. Medicaid, the state and federal health insurance for the needy, started picking up the cost of that expensive breathing machine and other care.

But Medicaid would pay only as long as the little girl lived in the pediatric intensive care unit at the hospital.

Beckett's parents, Julie and Mark, said they wanted their daughter at home. The girl's doctors agreed, saying she needed to grow up in a more normal environment than a hospital room.

Kabuki Syndrome Camper... A Place to Live??

What are the living options available for a special needs adult with Kabuki syndrome, who is medically fragile, has behavioral issues and is as capable of taking care of himself as a 5-year old?

Is adult foster care or living at home the only options for people with special needs. What happens when neither of these options is acceptable?

Kabuki Syndrome Mom and Dad were faced with these issues when their 18-year old, Nathan with Kabuki syndrome felt the need to be independent.