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

Advocates for those with Down syndrome are watching closely to see what effect ObamaCare will have on this population's future care.

The National Down Syndrome Society is nonpartisan and has no formal position on the healthcare law, but worries about the number of doctors who will stay in Medicaid.

"Because of this being enacted into law, because of the Supreme Court ruling, we're trying to figure out how this will have an impact on people with Down syndrome and their families," Sara Weir, vice president for advocacy and affiliate relations, told PJM.

The society is happy with the part of the healthcare law that has been reflected in Republican alternatives to ObamaCare as well -- making sure that pre-existing conditions aren't a disqualification for coverage.

"I think everyone would agree we don't want to deny anybody coverage because of a disability," Weir said.

As far as Medicaid, though, which covers 80 percent of people with Down syndrome, "having access to quality providers is a huge concern" -- especially as those with disabilities move up from a pediatrician to a general practitioner or internist and find fewer doctors taking new patients.

Concern about the number of doctors staying in the system, Weir said, is a worry "not only to the Down syndrome community but the broader disability community in general."

These concerns were voiced on the House floor before the ObamaCare repeal vote by the highest ranking Republican woman in the lower chamber, GOP Conference Vice Chairwoman Cathy McMorris Rodgers.

"I understand first-hand talking to so many within the disabilities community, and I hear their fear of not being able to find the doctors, not being able to find the therapists, within the Medicaid programs or within TRICARE because these are government programs that are too often making false promises," she said in the July 11 debate before voting in favor of repeal.

In April 2007, McMorris Rodgers gave birth to her son, Cole, who has Down syndrome. The next year, she launched the Congressional Down Syndrome Caucus, which she currently co-chairs along with Reps. Pete Sessions (R-Texas), Chris Van Hollen (D-Md.) and Eleanor Holmes Norton (D-D.C.). The caucus has 81 members.

"I can't compliment her enough -- she's an amazing advocate and an amazing congresswoman," said Weir, noting that their offices work together nearly every day. "She is absolutely our No. 1 advocate for Down syndrome in the U.S."

The changes are coming into effect as states are backlogged with Down syndrome children and adults on the wait list for services such as occupational therapy and nursing care under a Medicaid waiver program. About 100,000 people are on Texas' wait list, for example, and 8,900 in Louisiana.

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."