Ethan Wallace, head down, decisively storms out the backdoor of his group home in Plymouth. He checks on the garden, the shed, and then climbs onto some boulders edging the property.
“One thing about a guy like Ethan,” says Stuart Wallace, “he’s very healthy and very active. And with Ethan, there is no such thing as sitting still and relaxing.”
Wallace, a history professor, and his wife now live about a mile away from their son, who moved into this facility a few years ago. Ethan is 29 years old, autistic and doesn’t speak. Father and son communicate through simple yes/no questions, and long ago developed a system of routines to complete the tasks Ethan can’t do on his own.
“We used to brush his hair and then brush his teeth, and if I did it in the wrong order, he would quickly grab the toothbrush and let me know what a dummy I am, I got it all backwards. And so, Ethan likes things a certain way, and he is a creature of habit.”
But next year there could be a break in routine for people like Ethan who rely on Medicaid for long term care. It starts this December when New Hampshire switches to what’s called a managed care system for its Medicaid program. That puts the ‘management’ of benefits into the hands of private firms that get paid a fixed amount per enrollee. The idea is that these companies can find efficiencies to streamline services, potentially earning a profit by spending less than what the state gives them.
In the first year, this switch affects medical services--things like doctor’s visits and procedures. Then next December, the state intends to add coordination of long-term care services for 12,000 developmentally disabled recipients. That includes the 24-hour aides, housing and other supports advocates say help people like Ethan live fuller lives.
It’s that second part of managed care that upsets Stu Wallace.
“The coordination under Medicaid managed care is going to be handled from the top by one of three out of state health insurance companies. If my son’s needs have nothing to do with medical care--medicine, doctors, whatever--why in the world would it make sense for his entire life to be managed by an out-of-state health insurance company?”
In August, Wallace joined a lawsuit asking the courts to rule on whether the legislature even intended to include the DD community. The plaintiffs contend the technical language of the 2011 law that brought managed care to New Hampshire specifically carves them out. They say they were given assurances as the bill was being debated that long-term services weren’t part of the package.
The Department of Health and Human Services, they argue, only included those services after the law was signed, doing so in a way that lacked transparency.
Thomas Quarles with the law firm Devine, Millimet represents the plaintiffs. He says the $2.2 billion contracts DHHS agreed to with the managed care organizations, or MCOs, lack any protections for disabled Medicaid recipients.
“It is completely a blank slate, on which, at the moment, the state and the MCOs can pretty much write whatever they want.”
Republican Senator Jeb Bradley co-sponsored the 2011 legislation. He defends the DHHS contracts and says including the broader home and community services was always the plan.
“Absolutely,” says Bradley. “That was the clear intent of Senate Bill 147.”
Though Bradley says he’s now hearing concerns from families in his district. Of the three managed care companies, only one has experience working with this population in other states. And with nothing yet spelled out in the contracts about how the coordination of services may change, Bradley acknowledges there’s confusion about what lies ahead.
“For it to work, that outreach, which hasn’t been, done, is going to have to be done,” says Bradley. “And I think that is why you see the DD community reacting the way they are.”
That outreach from the state is now starting. Officials are holding forums, gathering the concerns of developmentally disabled people and their caregivers. DHHS says it still has time to craft the rules managed care companies will have to follow next December.
Governor Maggie Hassan is also playing a key role.
“I’ve done this work long enough as a mother, as a state senator, and now as a governor to know that good intentions don’t necessarily result in best practices,” says Hassan.
The Governor recently addressed a packed hearing room during a managed care oversight commission meeting in Concord. She sat at the head table, but reminded the room that she could have just as easily been sitting in the audience.
“I think most of you know that I’m the mother of a Medicaid beneficiary. Ben is 25, he has severe physical disabilities. He also is one of the brightest, kindest people I’ve ever known or met, if I do say so myself. I know that this is extraordinarily difficult, but I also know that every citizen in New Hampshire is being asked to participate in change in any number of sectors. And we can’t opt out of participating. And we can’t opt out of questioning ourselves about whether we can do things better, and whether we can improve lives as a result.”
Hassan wasn’t in office when the 2011 bill was passed, or the contracts written. The changes coming to the system, she says, make her anxious.
But as governor, she’s also in a position where she has to push the managed care transition forward, despite those concerns. She’s publicly urging fellow caregivers to move beyond the current fight.
“The law that established managed care was passed, and legal contracts are in place. So we need to move forward, and take advantage of the opportunity that this provides to improve care, that we provide to our families.”
But the DD community remains skeptical that managed care can somehow improve a three-decade-old network of service providers that already ranks among the best in the country.
“We have a system we as parents and guardians have put together for 30 years, and now it is being replaced by something that is undefined,” says Stu Wallace. “And we are not just talking about a frivolous thing. We are talking about the very life, health, safety, of our loved ones. And, having devoted 30 years of my life to Ethan’s care, I don’t like just throwing him into the abyss to see what comes out of the mix.”
Wallace, his attorneys, as well as lawyers for the state will be in court Thursday for the first step in a legal battle the Governor will be watching closely.
