Colton, age 4 (Indiana)

Meet Colton.  He loves watching movies (especially anything with the Despicable Me Minions), using the computer and Skype to connect with his preschool classroom, taking our Chihuahua Bella for a walk, and Play-Doh.

Colton has Short Bowel Syndrome (He lost 2/3 of his small bowel at birth.) and FPIES (Food Protein Induced Enterocolitis – For milk protein).

Colton requires skilled nursing home care for his CVL (Central line to his heart), specialized elemental amino acid based formula (a medical food for malabsorption due to Short Bowel Syndrome), an extra high dose vitamins and minerals due to malabsorption and risk of bone break/damage (vitamin D, iron, calcium, multi vitamin), feeding therapy for oral aversion (due to having had a nasal gastric tube for 1 year), occupational therapy, and access a to nationally ranked children’s hospital with Intestinal Rehabilitation and Research requires us to drive 4 hours each way from Indiana to Cincinnati, Ohio for specialty care every 6-8 weeks.

 Access to healthcare means life for our son. Simply put, without his Central Line and Elemental Formula he would die. That is his nutrition. It isn’t optional and has no substitute. He sees one of the best Intestinal Rehabilitation teams in the country in another state because his condition is so rare. NORD classifies Short Bowel Syndrome as a rare disease. Access to the specialists that treat other children like him has allowed him to be medically stable over the last 3.5 years since we began treatment at Cincinnati Children’s.

The ACA and Medicaid has helped our family with providing the A&D Medicaid Waiver with community based services. This has allowed our son to be cared for in the comfort of his own home with the support of skilled nursing (RN). This benefit has been invaluable in giving our son some normalcy and the opportunity to participate in our everyday home life activities. Without the Waiver services, my son, and other medically fragile children like him, would face being institutionalized in a hospital to get the required nursing services they need. Institutionalization is an awful choice that no parent should have to make. Children are best cared for in their own homes with and by their families. The Waiver gives us peace of mind knowing our son is with us, his needs are being met safely and comfortably, in a setting he can thrive in.

Proposed changes in the healthcare bill would be devastating to our family unit. If Medicaid funding is cut it may affect his community based Waiver nursing. Without it he would need hospital services which are more expensive in the long run and would separate him for his family. Cutting Medicaid would also affect his Special Education home bound services as some are reimbursed through Medicaid. A life time cap would financially ruin our family. Our son’s condition and needs are chronic and will be life-long. He will always need specialty physicians, a specialized diet (elemental formula and super vitamins), and support services to thrive. Capping him puts a price tag on his life and his worth. His life is just as valuable as any other American citizen and he doesn’t deserve any less care or to be singled out or discriminated against based on his medical condition.

My husband is a physician and cares for other people’s children every day. He worries if the new healthcare changes occur, how he will be able to continue to care for his son if he is capped, forced into a high-risk pool, or his Medicaid services are cut?

~Submitted by Heather and Jason, Colton’s parents