Autism spectrum disorder, which affects an estimated 1 out of 88 children by age 8, includes a broad range of developmental conditions. For many people afflicted with milder incarnations such as Asperger’s syndrome, autism is simply a manageable part of their everyday lives.
Elsewhere on the spectrum, though, there are children like 14-year-old Nathan Dodson, who lives with his parents in Hot Springs. Teresa Dodson, Nathan’s mother, said her son’s mental development is “about on the level of a 4-year-old.” When upset, he tends to throw fearsome temper tantrums, which have become more and more difficult to handle as he’s grown larger. ”He’s unable to bathe himself. We have to prepare his meals, his drinks — he can’t even open a package of snacks without help.”
Other kids his age would be doing chores around the house, but that’s not an option for Nathan. “We’re responsible for his care all day long,” Dodson said. Medicaid pays for a classroom aide to accompany Nathan throughout his school day, but at home his parents are on their own.
“Without having people trained to take care of our son, there’s no time away,” his mother said. “I can’t go to church anymore. We can’t go on vacations. We can’t even go out to dinner.” In 2011, it became clear she had to choose between working full time and providing care for her son. She decided to leave her 15-year career as an insurance agent. “I began working from home and took a 60 percent pay cut,” she recalled.
Arkansas Medicaid guarantees couples like the Dodsons around-the-clock care for their disabled child — but only if the child is sent away to live in an institution. Arkansas maintains five Human Development Centers (HDCs) that house children and adults whose developmental disabilities are severe enough to qualify them for an “institutional level of care.” There are about 1,500 developmentally disabled Arkansans currently living in an HDC or a similar facility, their care paid for by taxpayers. That sets up a cruel choice for families like the Dodsons. Simply fill out a few forms, and Nathan would be placed in an HDC within a few months.
“Two years ago I had to seriously think about placing Nathan somewhere,” Dodson admitted. “His behavior had gotten so out of control that the school and myself weren’t sure what to do. But after much thought, much research and a lot of prayer I knew that my son would always be the most comfortable in his own home and his own community. Despite his struggles, he has formed strong bonds with family and friends, and just the thought of taking away everything he has ever known made me sick.”
Only a few months ago, it looked as if a federal reform initiative called the Community First Choice Option (CFCO) might change all of that. The CFCO would allow families like the Dodsons to pay for at-home care with Medicaid dollars. Then, in September, a committee of the Arkansas legislature abruptly put the brakes on reform.
It would make intuitive sense to assume the reason Medicaid pays for institutional care but not home-based care is that HDCs are cheaper. But this is not the case. The Arkansas Department of Human Services says that the cost of providing home or community-based services (think small group homes and assisted living) is generally between one-half and one-third the cost of housing a person in an institution like an HDC.
There is an alternative — for some. About 4,100 families statewide are served by a DHS waiver program that allows them to redirect Medicaid dollars to pay for home/community-based services instead of institutionalization. That program, however, is capped. Another 3,000 families are on a waiting list for the waiver, including the Dodsons. They’ve been waiting for about seven years now, and movement is at a standstill. From 2010 to 2014, the family has progressed from 144st in line to 131st.
Dr. Charlie Green, who until recently ran the DHS division responsible for both the waiver program and the HDCs, said the backlog is unacceptable. “All these people are eligible to be in an institution, but they’ve chosen not to take those services,” Greeen said. “We have an obligation to serve these people and give them a choice.”
The Community First Choice Option would do just that, by requiring that every family with a child who qualifies for entry to an HDC be given the option of receiving home/community-based services instead. No longer would institutionalization be the default for long-term care. The waiver program would cease to exist, since everyone would become eligible for home/community-based services. Nor would this choice be extended only to the developmentally disabled: Elderly and physically disabled individuals who require a high level of care would also be guaranteed the right to obtain home/community-based services in lieu of entering a nursing home. Because of the cheaper cost of home/community-based care and an improved federal Medicaid match rate (see sidebar), DHS said the change would save the state around $365 million over the next 12 years.
As a program of DHS, an executive agency, the CFCO does not entail a change in existing law, but its implementation still requires legislative review. On Sept. 25 the Joint Public Health committee deferred action on the issue until the 2015 session or perhaps later. The committee cited the fact that DHS is still working out technical details of the program with its federal counterpart, the Centers for Medicare and Medicaid Services (CMS). Democratic Rep. Greg Leding of Fayetteville, who supports the CFCO, said that was largely used as a fig leaf by legislators who want to kill the reform.
“Personally, I think it has more to do with legislative opposition than the questions from CMS,” Leding said. “They’re using concerns from CMS as political cover, because they don’t want to come across as the bad guy. … I think there are legislators who are taking every opportunity to delay.”
Disability activists agree, and are outraged. Dodson and other parents rallied on the steps of the state Capitol in September and packed legislative hearings, pleading for lawmakers to approve the CFCO. Now, they are moving forward with a lawsuit against the state; Dodson says there will be at least 50 claimants and that they are seeking more.
In protest of the legislature’s intransigence, a national disability activist group called ADAPT staged three days of civil disobedience in Little Rock seeking commitments from the two men who are seeking to be Arkansas’s governor in 2015 — Democrat Mike Ross and Republican Asa Hutchinson — to make the CFCO a priority if elected. Ross’ camp was receptive, saying it supported the goals of the CFCO. After 21 protesters were arrested for trespassing at Hutchinson’s headquarters, his campaign declined to state a clear position.
ADAPT activists also targeted the two major interests that it believes are behind legislative resistance to the CFCO. The first is Americans for Prosperity (AFP), the Koch-funded conservative political nonprofit. The second is the nursing home industry.
Of these two groups, the objections of the first are more immediately clear: The CFCO is a part of the Affordable Care Act, and Americans for Prosperity is programmed to open fire on anything associated with Obamacare. That may be why the CFCO was pulled off an August agenda by Sen. Cecile Bledsoe (R-Rogers), an ally of AFP who co-chairs the Public Health committee.
On its website, AFP says the CFCO would give “more federal control” over who’s eligible for benefits and implies that the change would allow enrollment to balloon out of control. But state officials say that nothing in the CFCO would expand an entitlement to a new population. Rather, it gives a choice about how that entitlement is provided.
“These folks are already eligible,” Green said. He reiterated that home/community-based services are generally cheaper than housing someone in an HDC. “The average is around $43,000 annually for someone on a waiver. It costs over twice that to stay in an institution.” Green explained that the higher expense of institutional care comes from maintaining a facility, including utilities, building upkeep and the cost of a round-the-clock medical staff. Most families that receive care at home only require services for a few hours each day, not around the clock.
“We’re talking about services in the home to help with activities of daily living — basically attendant care and respite,” said Dianna Varady, the director of the Arkansas Autism Resource and Outreach Center at the University of Arkansas’s College of Education and Health Professions. “You can’t just leave your child, or your adult child, with the high schooler down the street who’s your babysitter.” An advocate for the developmentally disabled, Varady also has a son with autism who has been on the waiver waiting list for about seven years.
The second moneyed interest behind opposition to long-term care reform is the Arkansas Health Care Association (AHCA), which lobbies for the interests of nursing homes. The AHCA’s website says it represents 93 percent of the licensed long-term care facilities in Arkansas. Unlike Americans for Prosperity, the AHCA has been discreet in voicing its opinion on the CFCO; in an August legislative committee, the AHCA presented a list of questions, but did not state a position.
“I think the nursing homes have sort of identified legislators who can carry this issue,” Rep. Leding said. “They’ve been very stealthy in their opposition, and it took me a while to figure out why. I think they see this as something potentially being a lot bigger.” Indeed, since the developmentally disabled are typically served by state-run Human Development Centers, why does the industry care about the CFCO?
Varady said the answer lies in the fact that the CFCO also reforms long-term care for another population that nursing homes do depend on for business: the elderly. Like the developmentally disabled, elderly Arkansans with a sufficient level of need are entitled to institutional long-term care under Arkansas’s current Medicaid program. That typically means being sent to a nursing home, but there’s also a distinct DHS waiver program that allows the aged to seek home/community-based care, called ElderChoices. As of now, there is no waiting list for the ElderChoices waiver, because its cap has not yet been reached.
However, that doesn’t mean institutional care and home/community-based care are equally easy to come by, Varady said.
“The way it works typically is that if, say, I’m in my 70s and break my hip, I’ll go to the hospital and then I have to make a choice about going into a nursing home or seeking a waiver. The process for transitioning into nursing home is super easy and seamless. There’s no paperwork, no waiting. If you want care in your home you have to fill out a waiver application and wait for it to be reviewed.
“If the CFCO moves forward, that changes. Home care becomes an entitlement benefit.”
No more waiver process — instead, home/community-based care would be offered as an option for everyone. With the population of Arkansas aging, nursing homes stand to gain a great deal of business in the coming decades, but the CFCO potentially poses a threat to the business model upon which the industry is predicated. To the nursing home advocates that oppose long-term care reform, this isn’t about the 3,000 people on the developmental disability waiting list at all. They’re simply collateral damage.
The Arkansas Times made repeated requests for a statement from the AHCA about the Community First Choice Option, but the only response offered by Rachel Davis, the AHCA’s executive director, was the following: “Due to ongoing police investigations, I am not able to comment at this time on events at our office last week,” a reference to the ADAPT protests. The AHCA did not respond to multiple phone calls and emails asking for a policy position on the CFCO itself.
For some families such as the Dodsons, it is apparent from a very early age that their children have a developmental disability. For others, that diagnosis comes later. Doug and Julia Siemens didn’t discover their son, Trenton, was autistic until he was in the fifth grade, when his difficulty communicating became more and more pronounced.
“As he grew and as his hormones kicked in, because of his lack of communication skills … well, every kid on the disorder spectrum expresses things differently,” Doug Siemens said. “We just happened to have one who reacted with anger outbursts, and that was taking quite the toll on us. We applied for the waiver when he was a freshman or sophomore in high school.” That was in 2005.
Trenton remained on the list throughout high school, then after his graduation in 2009. He continued living at home for a couple of years afterward, and as his outbursts became more frequent and more violent, the Siemenses grew desperate for help. Placement in an institution seemed like their only option. They discovered that due to a quirk of DHS rules, Trenton would get bumped to the top of the waiver waiting list if he were housed in an HDC.
“Then there was an incident that happened, and … we couldn’t have him at home any longer because of what was going on,” Doug Siemens said. The family got Trenton into the Jonesboro HDC — a long way from their home in Siloam Springs, but the Siemenses felt the facility was the best among what the state had to offer.
The family obtained their long-sought waiver about a year later. Trenton was placed in a transition group home, first in Jonesboro and then later back in Northwest Arkansas. He now lives in his own house in Siloam, which the Siemenses purchased with help from their extended family, and he’s assisted by aides and nurses from Arkansas Support Network, a nonprofit that provides home/community-based care for individuals with developmental disabilities. Doug Siemens said it’s been transformational.
“ASN is very structured, and that’s what Trenton thrives under. They’ve been able to get him out in the community … he’s gone from a kid who wouldn’t look up and would just mumble hello, and now he’s one of the greeters at our church. He takes that job very seriously on Sunday mornings. He loves it, and people love seeing him, because they remember him not being that way.”
He’s also started playing team sports, something he could never do in school, said Doug Siemens.
“This is his fourth year playing softball with the development league over in Springdale. They’re adults from all across Northwest Arkansas and they have a blast.”
Eventually, the Siemenses are hoping Trenton will be able to find a job.
None of this would be possible if he were still in an institution. “Now, I’m not saying HDCs aren’t needed,” Doug Siemens said. “There are some people for whom that’s what’s necessary … but I can honestly say that if Trenton was in the HDC, he would have regressed. He wouldn’t have had enough people around him who would have challenged him to grow. Here, he is progressing. He is doing better.”
It’s easy to forget that the developmentally disabled, like all of us, are works in progress. Though a person like Trenton may lack the full agency to make independent decisions about where he lives, his living circumstances make all the difference between growth and stagnation. The same is true of the elderly. A massive study published earlier this year in the Journal of the American Medical Directors Association tracked 3,777 elderly people over the course of 22 years; after comparing those in nursing homes with similar clinical conditions who remained outside of an institution, it concluded that “institutionalized elderly people present a greater cognitive decline than persons remaining in the community.”
But the need for home/community-based services is perhaps most pressing for parents of young children with developmental delays, as Julia Siemens pointed out.
“For the parents who have an 8- or 9-year-old, or even younger, it’s really going to help them to get services,” she said. “The sooner you can start getting children therapy, the better off they’re going to be, years down the road. We were not able to have that luxury for Trenton because we were trying to do everything on our own.”
The Siemenses have their waiver already, but they said the CFCO needs to move forward so others can get relief. “We’re pretty conservative, and Republicans,” said Doug Siemens, but, “we don’t see this as a partisan thing. I don’t care that it was attached to Obamacare or whatever. If it’s going to help families, then that’s not an issue for us.”
In addition to fiscal conservatives and the nursing home industry, there’s a third, more sympathetic source of opposition to the CFCO: some parents of children currently in the Human Development Centers. They worry that the shift toward home/community-based care will eat into HDC budgets. Legislators of both parties whose districts include HDCs are also fiercely protective of the institutions, which are major employers back home.
“We’re not going to shake people out of HDCs — that’s not the game plan at all,” Green, the DHS official, said. “We’re just giving them a choice. We don’t have any plans to reduce budgets on HDCs.”
However, he conceded, “from the numbers of people in HDCs today, we can see that demand has waned. If people don’t have to wait for home and community-based services for eight years, it might go down more. The demand for these services all over the country has gone down. A lot of the parents of people in HDCs right now, their kids have been in there for 20, 30 years. There weren’t a lot of options back then.”
Leding, who in 2011 worked on a legislative study of care for the developmentally disabled, said that the state has to face the fact that long-term care is shifting away from places like HDCs. “We’re one of the last states to use them,” he said. “I do think their days are numbered … Nobody wants to shutter the HDCs tomorrow, but as far as directing more people to the centers — I think we should do more to promote the idea of independent, community-based care.”
With 4,100 families receiving waivers, another 3,000 on the list, and only 1,500 now housed in an HDC or similar institution, it’s clear that — given a choice — most families would rather keep their children at home or in their communities than send them to an institution. It seems likely that most elderly and physically disabled people would prefer the same. To deny them that option is to argue, in essence, that people who could live more cheaply and comfortably in their own homes and communities should be forced to live in institutions so that the institutions can continue to have a reason to exist.
The plaintiffs in the class-action case instigated by Dodson and others seem to stand on strong precedent. In a 1999 case called Olmstead v. L.C., the U.S. Supreme Court ruled that the state of Georgia had violated the civil rights of two disabled women by confining them in an institution for years after they asked to move to a community-based setting. The court’s decision in Olmstead made two judgments explicit. First, “institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable of or unworthy of participating in community life” and, second, “confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment.”
Dodson said the state’s lack of action on the CFCO violates Olmstead. “We’ve already been waiting entirely too long. We should not have to continue waiting,” she said. Lately, things have been especially rough in her household. Her older son, who helped out with Nathan, has moved out of the house. Complications from back surgery kept her husband away from work for an extended period earlier this year. “We’ve got behind on our bills, further and further behind,” she said. (Her husband has since resumed work after recovering from surgery.
Sending her child away to an institution, though, is still off the table.
“I decided [two years ago] that I would make any sacrifice I had to make to keep my son at home and living within his own community where he is loved and protected. If it had come down to it, I never would have been able to leave him anywhere. As a parent, could you move your child away from everything they’ve ever known?”