Wednesday, January 21, 2009

Disability: Pride, Acceptance, Power

On Sunday night, my wife and I attended the first ever Disability Power and Pride Inaugural Ball. The organizers stated that about 1,000 people attended. Former U.S. Representative Tony Coelho, who lives with epilepsy and serves on the national board of directors of the Epilepsy Foundation of America, served as master of ceremonies. Leading members of the U.S. Congress came by and spoke. President-elect Obama sent a written letter of gratitude and greeting.

I went to celebrate the progress of the movement I started working with in 1971, and to chat with fellow “gray hairs” about our progress. But what was evident, as soon as we walked in the door, was that this is a youth movement. Walking the streets of DC to get to the ball, we saw that young people were everywhere—excited and full of enthusiasm. Folks at the ball, while excited, hopeful, and full of dignity and pride, were concerned with their underemployment or nonemployment.

As President-elect, Barack Obama typically included messages about inclusion of people with disabilities. His written message emphasized, "In my administration, we will address the shameful employment situation for persons with disabilities." My son, aged 18, will graduate high school this coming summer. We have great anxieties about his next steps, about the many obstacles in the transition, and ultimately about gainful employment down the road. In recent years, CHADD has made applications to agencies of the federal government and private foundations to constructively and directly assist families dealing with the transition from school to work. We have not been successful.

Finding the balance is a key. We know that highly intelligent and creative folks with AD/HD do well in life and employment, despite their challenges (the Ned Hallowell school of thought). We know the result of failure to provide structured support and accommodation (the data documentation of Russell Barkley). CHADD has featured both experts at our annual conferences. Our challenge—and the challenge facing federal public policymakers—is how to recognize and build on the strengths and capabilities of individuals with disabilities, while acknowledging and modifying policies that provide the supports and accommodations to promote independence, happiness, and success. We really need an "individualized" response, which does not exist.

As an example, the U.S. Congress is working on an economic stimulus initiative. The House legislation includes a Centers for Disease Control and Prevention (CDC) initiative to lay the foundation for job growth by dealing with chronic illness. CHADD and sister national organizations working with the CDC National Center on Birth Defects and Developmental Disabilities (NCBDDD) are trying to convince Congressional leaders to insert "disability and health" into these initiatives.

These are very challenging times. These are times of hope and opportunity. CHADD hopes we can continue to find the right balance between recognizing and building on capabilities while building the supports and accommodations people with disabilities need to be successful.

We will keep you informed.


You can read this blog and others like it at the HealthCentral Web site.

Wednesday, January 7, 2009

Living with a Child with a Disability

by Cynthia A. Smith, MS, CAS, JD

On December 16, 2008, I attended a press conference announcing the release of the findings from a research project titled Living with Autism. Although the study focused on children with autism spectrum disorders, I could not help but think a study on families of children with AD/HD or any disability that significantly impacts daily living activities might share some of the same findings.

I thought back to all the children with disabilities I worked with in high school and college, and to my own family experiences. As I listened to the results, I mentally checked off items of concern that I had heard from parents of children with disabilities over the years. The study confirmed for me what many family members and care providers have known for years: A child’s disability does not just change how we care for a particular child, it also affects the entire family because of physical and attitudinal barriers in society.

Harris Interactive surveyed 1,652 parents of children who have an autism spectrum disorder and 917 parents of children without disabilities. Parents were questioned regarding the ongoing challenges their families face in the areas of daily life, relationships, independence, education, housing, finances, employment, and healthcare, as well as how they view their child’s future. Some of the findings include:
- 14 percent of parents of children without disabilities think their child will be able to make their own life decisions, compared to 65 percent of parents of children with autism.

- 51 percent of parents of children without disabilities think their child will be able to have a spouse or life partner, compared to 9 percent of parents of children with autism.

- 60 percent of parents of children without disabilities are concerned about their child’s future employment, compared to 76 percent of parents of children with autism.

- 32 percent of parents of children without disabilities believe their child will be living at home beyond age 18, compared to 79 percent of parents of children with autism.

- 42 percent of parents of children without disabilities believe their child will have healthcare that adequately covers their needs, compared to 18 percent of parents of children with autism.

More information about the study is available here.

Cynthia A. Smith, MS, CAS, JD, is CHADD's Public Policy Specialist.
You can read this blog and others like it at the HealthCentral Web site.