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.