On Wed., Aug. 10, Representative Pete Olson (R – Sugar Land) and Deputy District Director Robert Quarles met with several representatives of the Muscular Dystrophy Association (MDA) as part of MDA’s Fly Out to discuss Transitions Services and the obstacles faced by adults living with pediatric diseases. Each year in the United States, nearly half a million youth with disabilities and chronic health conditions cross into adulthood — and the numbers continue to grow. However, barriers continue to exist for young people seeking higher education, employment and independent living.
Tomas Diaz, a 22-year-old living with Spinal Muscular Atrophy (SMA) Type II and former MDA Goodwill Ambassador, spoke with Representative Olson about middle-class young adults who don’t have the financial resources to support themselves and who also don’t qualify for government assistance.
“The greatest need in our quest for independence is finding qualified live-in attendants to help with everyday necessities,” said Diaz, who is also pursuing a master’s degree at St. Thomas University in Houston. “What if there is an emergency at my house and I can’t get out of bed? Unfortunately, private insurance and the Department of Aging will not cover the cost of an attendant living in a patient’s home.”
In addition, adults living with pediatric neuromuscular diseases highly depend on wheelchair-accessible vans to get to work, school and meeting their other transportation needs. “It is difficult to get to work and school on a bus when you’re dealing with all the other daily tasks you have to take care of when you’re living with special needs,” said Steve Holland, AMS van representative and MDA sponsor who was present at the meeting.
By the end of the Fly Out, it was clear that Diaz made a strong impression on Representative Olson, who said “This guy is a stud!” as they posed for pictures. Deputy District Director Quarles shared this sentiment, stating, “Tomas has the heart of a champion.”
“It was great to have a chance to sit down with one of our representatives,” said Diaz. “It is my hope that by witnessing people in these struggles and situations, congressmen will not see transition services as just another problem to solve but the effort of young adults to live full lives.”