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A little known program approved during the Reagan administration has helped a local family get the medical care their son needs for a rare medical disorder, and it is among programs they believe likely to disappear under present Republican proposals.
Jenny Wolf and Matthew Nelson had not necessarily envisioned themselves ever becoming political activists, but the recent health care debate has prompted them to at least begin calling their legislators to speak out on behalf of their son, and to encourage others with concerns about the proposed health care bills circulating in the nation’s capitol to do the same.
The couple’s son Graham Nelson is fun-loving and has a smile most days, but the child has a rare genetic disorder that has made his young life more of a struggle than for other children. The condition is so rare doctors don’t yet have a name for it. Nor is anyone sure exactly what Graham will face in the days to come.
Through genetic testing, a mutation was found in Graham’s GRIN 2B chain, a mutation that is so rare that fewer than 100 people in the world are known to have it.
“Not only is it rare, but the people with mutations on this gene are really varied,” Matthew Nelson said. “We don’t really know what the result of that will be. So all we can really do is get him the therapy that will help him right away and treat issues as they come up.”
Early intervention, the couple believes, is probably the best shot at a normal life for Graham, and thanks to a Medicaid waiver that has helped them afford therapies he needs, they have personally seen the how much difference
“The therapies they get at preschool are like preventative medication, and that is what we’d lose,” Nelson said. “Getting these things early and as often as possible is what helps a lot of these kids grow up to lead more normal and productive lives. If they don’t get these things, they are much more likely to require institutional care later and become a tax burden. So paying for some therapy now is a better investment than having to pay for a lifetime of care afterwards.”
Medicaid waivers have been around since the early ’80s. Children born with disabilities were living in institutions, which made them eligible for Medicaid. Parents and other activists pointed out that if the children lived at home, they could be treated for less cost — but that would only work if the children could keep their insurance to cover the medical care they needed.
“President Reagan agreed with this and started issuing waivers because of their medical conditions,” Nelson said. “In North Dakota there are around 5,500 of them for developmental disabilities, which is what Graham falls under.”
The program helps cover gaps in the couple’s insurance, where Graham’s treatment would be too expensive for them to afford.
Copays for the speech, physical and occupational therapy alone are between $8,000 and $9,000. The genetic testing, meanwhile, was $2,000 after their insurance paid out what it was going to pay.
These are not costs the couple could collectively afford and still pay for a roof overhead, even though both are employed in good-paying jobs and have good insurance through Wolf’s employer.
Both of the present health care bills circulating in the House and Senate have proposed cutting Medicaid substantially — 25 percent overall in one proposal, which is an estimated savings of $800 billion over the next 10 years.
“Not everyone would lose their Medicaid under this, but it’s likely a lot of the waiver slots would be lost,” Nelson said. “So a lot of kids who would have had it because of developmental disabilities won’t get it unless their parents are very low income.”
He also believes many adults with disabilities could lose their Medicaid as well.
“We are really against any kind of cap or cut to Medicaid,” Wolf said.
“With any kind of lifelong condition like this, we are really concerned about the lifetime cap for benefits,” Nelson agreed. “Because those with disabilities, what they are essentially saying is that at a certain point if it is costing you this much to get to this point, you are a lost cause and not worth it any more. We just cannot imagine the government saying that. I can imagine some people saying it. I just cannot imagine the government saying it.”