Doctors Staying in Medicaid a 'Huge Concern' for Down Syndrome Community

The society has no position on Medicaid expansion and no sense of how the choice of some states to opt-out might affect the disabled.

"We don't have sense about positive or negative impact that may have on families yet," Weir said, "though we are closely monitoring that."

Weir points to current initiatives in Congress that could be moved through to help the Down syndrome population, including the ABLE Act that would provide individuals with disabilities flexible savings tools such as college savings accounts, health savings accounts, and individual retirement accounts. It includes a Medicaid pay-back provision for when the beneficiary passes away.

"When Cole was born, we were advised not to put any assets in his name because it would penalize him if he needed to qualify for a government program someday," McMorris Rodgers wrote in The Hill last week. "Millions of others parents face the same impediment: they want to expand their children’s options without jeopardizing their access to benefits. We must get rid of federal policies that limit those with disabilities and make them dependent on the government."

Weir notes that the ABLE Act, which has 172 bipartisan co-sponsors in the House and 22 in the Senate, helps address the aging-caregiver issue particularly given the rate of those with Down syndrome developing Alzheimer's later in life.

Helping families save money for a life of care, Weir said, "makes people with Down syndrome less reliant on entitlement programs."

McMorris Rodgers is also the sponsor of two bipartisan bills to "expand and intensify" National Institutes of Health and Centers for Disease Control and Prevention research into Trisomy 21.

Concerns about ObamaCare and the disabled have been brought up in different areas since the law went into effect.

Former Sen. Rick Santorum (R-Pa.) charged on the presidential nomination campaign trail that ObamaCare could lead to more abortions of the disabled by requiring amniocentesis. Scott Gottlieb, a former senior official at the Centers for Medicare and Medicaid Services in the Bush administration, warned that "dual-eligible" disabled seniors who qualify for both Medicare and Medicaid will be "herded" into Medicaid and receive lesser care as a result.

For McMorris Rodgers, it's about not putting a cost-value equation on lives and ensuring that policy reflects that.

“Cole has given me a whole new perspective on being a mother and also a Member of Congress," McMorris Rodgers said on the House floor to mark World Down Syndrome Day in March. "Cole’s birth has given me a whole new purpose for serving in Congress, and he reminds me every day of the significance and tremendous impact that every person has in this world."