Monday, May 17, 2010

Graduation Season Brings New Hurdles for Families of Students with Intellectual Disabilities Most parents unprepared when children age out of the special education system

Boston….. May 18 2010   Along with three million students graduating from high school this June are another 500,000 young adults aging out of the special education programs which, since 1975, have assured children with disabilities an appropriate free public education up to the age of 21.  For the 300,000 of them with substantial intellectual disabilties, graduating from the safety net of integrated services in the school setting shifts the task of structuring a productive life for the disabled to parents who are often unprepared for the complexity of the task, according to Jo Ann Simons, president of the National Down Syndrome Society and CEO of the Cardinal Cushing Centers, Inc.  Ms. Simons, author of the new Down Syndrome Transition Handbook, says that planning for this moment should begin at least five years before the child graduates from special education.

“People with intellectual disabilities rarely make enough money to sustain themselves, if they can even hold a job,” says Ms. Simons. “ There is no guarantee that what the person with disabilities needs will be available.  Parents have to assemble a patchwork of discretionary public and private resources to enable a young adult to have a meaningful and safe life.”

Envisioning and planning the child’s next 30 or 40 years is overwhelming; that is why the planning should begin early in manageable chunks and involve the child.  Ms. Simons' new book is the first to itemize all the elements for parents to consider, as well as the pros and cons of various options and means of support.  “The planning must begin early in high school when deciding what course of study your child will pursue, and continue from there,” advises Ms. Simons.

“If you are wealthy, you only need half the advice, “ says Ms. Simons, herself the mother of a 31 year old son with Down syndrome. The book addresses financial issues as well as housing, health care, legal, employment, and personal/social issues and presents an array of options.  There’s no one right approach, she says.  Decisions depend on what works for each person and each family.

Housing is one example. Where will the disabled adult live?  If not with parents, who should own the house.  If a social services agency owns a home, the agency decides about roommates; if parents own and lease back the home, they have some control of roommates.   Should the disabled adult have a guardian? Many years have been spent educating the child to make decisions; should the right to make decisions be foreclosed?

Ms. Simons says that while the book was written to encompass the special medical issues of people with Down syndrome, all the non-medical issues raised in the book are applicable to parents of all children with intellectual disabilities.

Billions of dollars have been spent on special education so that children with disabilities can be as productive as possible.  This book helps parents leverage that investment over the rest of their child’s life. 

Note:  The book is the culmination of the author's professional and personal experiences guiding hundreds of families with an intellectually disabled child through the transition process, and parenting her own son with Down syndrome, now an adult living independently.  Its conversational style reassures parents overwhelmed by a complex process and its frank advice offers a reality check for parents whose child will soon venture into the adult world, or whose adult child has yet to leave the nest.

 The Down Syndrome Transition Handbook outlines the steps of transitioning.

It addresses broad issues such as meaningful ways to fill one's days (work, volunteering, leisure activities, training and education, exercise), transportation (driving vs. using public transportation), independent living, eligibility for benefits, social and sexual activity, and legal issues.

About the Author:  Jo Ann Simons, M.S.W., is CEO of the Cardinal Cushing Centers of Massachusetts, a residential learning center.  She is Chair of the National Down Syndrome Society and of LIFE, Inc. on Cape Cod.  In addition, she served as the President of the National Down Syndrome Congress and on the Board of Special Olympics, Inc., and was a founder of the Massachusetts Down Syndrome Congress. She and her husband live in Swampscott, Massachusetts. They have two adult children.

Down Syndrome Transition Handbook
Pub. Date: March 2010    *    Publisher: Woodbine House
Paperback, 375 pp.     *     ISBN-13: 9781890627874
Cost: $24.95


For review copies, contact  Fran Marinaccio, Woodbine House,  301-897-3570, email

interview requests to 
Jo Ann Simons
(781) 829-1200

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