Parents of children with developmental disabilities are fighting for the resources they need to care for their children at home, attempting to transform Louisiana's health care system along the way.
By Denise Trowbridge, New Orleans CityLife, September 2004
Nick Gilbert and Alisha Engrum are the lucky ones.
Gilbert, 23, is a typical young man in most ways. He works hard, holding down two part-time jobs, one at the Palace Movie Theater in Elmwood, the other at the Jefferson Parish Human Services Authority. He likes to travel and recently vacationed at an Arizona dude ranch. Gilbert hopes to purchase his own home soon.
Engrum, 24, recently moved into her first apartment. She likes to go to the mall, to the movies and to church every Sunday. This is the first time she has lived on her own, and she has a standing once-a-week “date” with her mother, Myra, so they can check in with each other. Engrum is also looking for a job - but she's holding out for the right job, not just the first one that comes along.
In most respects, Gilbert and Engrum are typical 20-somethings taking the first steps toward independence in a complicated world. But they have more in common than just the dreams and aspirations they share with millions of other American young adults; both are individuals with developmental disabilities who have been lucky enough to receive the support they need to live full, active lives.
Gilbert has mild cerebral palsy with significant speech and motor delays; Engrum, who was diagnosed with Mohr's Syndrome at age 2, has a developmental delay coupled with mild mental illness.
For every person like Alisha and Nick in Louisiana, there are at least two more who are not receiving the services — Medicare and Medicaid waivers, in particular — they need to lead independent, productive lives. While Alisha and Nick go to the mall or to work, thousands of other people with developmental disabilities either live in state-run institutions and private nursing facilities or are on a Medicaid services waiting list, piecing together the best life they can until it's their turn to receive help.
Community-based care — which includes everything from transportation, in-home nursing assistants and employment training and support services — allows a large number of people with disabilities to live in their own homes, enter the workforce and be near their families.
It's also a hot button political topic in Louisiana.
The demand for community-based care is increasing, but Louisiana hasn't kept up. Instead, the state still leans heavily on public and private institutions. A reliance, advocates say, that went out of style 20 years ago and is a symptom of deep systemic problems - such as powerful special interest lobbies and individual legislators who stand to gain financially from keeping the elderly and disabled in nursing homes and institutions.
Advocates say Louisiana is behind the times, trailing the nation in progress and holding on white-knuckled to outdated, expensive programs when better alternatives exist. Where other states have made leaps forward, Louisiana has taken only baby steps.
Recent state and federal Medicare and Medicaid funding cuts will likely add fuel to this already fiery debate. Medicaid is the financial backbone of services for people with mental retardation and developmental disabilities (categorized as MR/DD), accounting for 75 percent of all MR/DD spending in the United States in 2000.
When government tightens its purse strings, Medicaid-eligible individuals with disabilities such as Gilbert and Engrum risk losing essential services, services that could mean the difference between living at home and holding down a job or spending the rest of their life in an institution.
The demand for resources keeps growing even as budgets shrink, creating a crisis of care for Louisiana's population of children and adults with developmental disabilities.
The Waiting List
Without a Medicaid New Opportunities Waiver, Alisha Engrum would not be able to live on her own. Two years ago, she moved out of her mother's house and into an apartment. The waiver pays for most of the services she needs to live independently. “She has supervision all the time,” Myra, her mother, says. “There is always someone there to help. They come over to groom her and provide transportation to and from jobs and recreational activities. People have even come over to teach her how to cook.”
The waiver also covers the costs of specialized medical equipment and supplies, job training and support, as well as short-term respite care.
For Myra, and parents like her, the waiver is a godsend. She can give her adult daughter a modicum of freedom and self-determination despite her disability, and at the same time not have to worry that Alisha is in danger or not properly cared for. “Now, after all these years she can have a life of her own. She gets to make her own choices and like any parent that's important to me,” Myra says. “And for the first time in my life I am learning to do a little bit for myself, too.”
In 2004, 4,433 Louisiana residents with developmental disabilities used the NOW waiver. But 7,932 people who needed a NOW waiver went without; they were on the state's Request for Services Registry waiting list and it looks as though they will be waiting indefinitely; the Louisiana Legislature is only adding 66 more waivers in 2005.
The Louisiana Department of Health and Hospitals estimates that the average person waits 1,711 days, or approximately four and a half years, for a waiver. But the nonprofits who assist people with developmental disabilities aren't convinced that is an accurate number. Rose Gilbert, who is Nick's mother, is the executive director of Families Helping Families of Greater New Orleans, a nonprofit providing information and referrals, education and peer services to the families of children with developmental disabilities. She says she has known parents who have waited 9 or 10 years. Cliff Doescher, the executive director of The Arc of Greater New Orleans, says an average wait of between 7 and 8 years is common.
There is a reason the wait is so long. Louisiana ranks 44th in the nation for the percentage of state funds allocated to community-based services. Last year, Louisiana spent only 17.9 percent of its Medicaid long-term care budget on waivers and community-based services; the national average was 33.1 percent. The rest — 82.1 percent — went to private and public long-term care and nursing facilities. Although Louisiana has improved since 1996, when the state only spent 8.1 percent of its budget on community-based care, the state has a long way to go to catch up with the rest of the nation.
In the meantime, families make due. According to Gilbert, some of the people on the waiting list are currently living in group homes or institutions, so they are receiving help. “It may not be the desired service, but it is still a service,” she says. A select few receive a nominal amount of state money to help with the costs of caring for a family member with a disability at home, usually $200 to $300 per month. “The rest get nothing.”
Baby Stepping toward Community-based Care
The concern for those who receive nothing and for the thousands living in limbo for years, making do until they get a waiver has pitted parents and community-based care advocates against Louisiana's powerful nursing home and institutional care lobby.
By law, Louisiana is required to make community-based services available to those who want them. The 1999 Supreme Court Olmstead vs. L.C. decision requires state governments to offer community-based services as an alternative to institutional care to people with disabilities who, with assistance, are capable of living outside of an institution. States that do not offer community-based programs are violating the Americans with Disabilities Act.
Despite the ruling, Louisiana only began to shift toward community-based services after the state's advocates and parents filed their own class-action lawsuits.
One was Chisholm vs. Hood, which determined that the DHH was violating federal law by not offering psychological and behavioral services to Medicaid-eligible children, especially those with autism. The other was Barthelemy vs. the Louisiana DHH. In this case, parents claimed the DHH's failure to provide community-based services, as well as to give individuals a choice between community-based and institutional care, was a violation of the ADA. The court agreed.
Associations such as the Louisiana Nursing Home Association, however, did not.
The LNHA claimed that the court-mandated settlement agreement — which required the state to provide an additional 600 NOW waivers, 50 adult day care waivers and 50 personal care attendant waivers — adversely affected nursing home revenues and undermined the financial solvency of the state Medicaid program. They requested that the settlement be scaled back. To the relief of advocates, the LNHA's request was denied.
But the LNHA's request, advocates says, highlighted one of Louisiana's roadblocks to progress in MR/DD funding: glaring conflicts of interest and powerful lobbies who benefit financially from keeping people in institutions rather than integrating them into the community. “Louisiana is backwards and is usually the last state to accept change. It's because of the political connections,” Gilbert says. “In Louisiana, it's legal for a legislator to own a nursing home. I have a problem with that. How is it okay to be a lawmaker and make decisions on where money goes to serve people when it directly affects you or your family's income?”
Financial conflicts of interest may be one reason that, five years after the landmark Olmstead decision, Louisiana ranks third in the nation for the most people with mental retardation and developmental disabilities living in nursing homes; why the state still operates nine large scale institutions and spends 80 percent of its MR/DD funding on public and private long-term institutional care; and why state funding to Louisiana's already-existing community-based services organizations has been cut while institutional budgets have either remained the same or gone up.
In an attempt to buck this trend, Louisiana Citizens for Action Now introduced Louisiana House Bill 1324 in the 2004 regular legislative session. Known as the flexible funding act, the bill would allow people with disabilities who are currently living in institutions to move to a community setting by providing Medicaid waivers and transition services. “We proposed a pilot program where one percent of people currently living in institutions could make the transition to community-based care and supported living arrangements,” says Myra Engrum, who is the LaCan team leader for Orleans, Plaquemines and St. Bernard parishes. “We faced a lot of opposition,” she says. “Institutional lobbyists kept saying 'they have no place to go; they won't make it; they need us.'”
House Bill 1324 is part of a larger “Fund People Not Places” movement to change the structure of government MR/DD spending. It's aim is to allocate money to each individual, instead of each organization; then, whichever provider or service the person chooses to use receives the money.
The bill is on hold until the legislature can conduct a feasibility study. “We were disappointed but at least we didn't get completely shot down,” Engrum says. “There is still a chance that it will pass.”
Valuing Institutions
Niki Trager objected to House Bill 1324. She is the program director of the Padua Pediatric Residential Program, an institution run by the New Orleans Catholic Charities that houses 33 medically-fragile children with severe mental retardation. “House Bill 1324 was bad for us,” she says. “It meant that every time I discharged a child, I couldn't bring anyone else in because I would lose funding for that bed. We just can't operate if we don't have full capacity.”
It's a sentiment shared by representatives of other residential facilities opposed to the bill. “We need the money because we have too many complicated things to pay for,” Trager adds. “Medical care is expensive and Medicaid doesn't pay for everything.”
If Padua loses any more funding, she says, it will have to cut back on the quality of care given to those who are left behind.
Trager is also concerned about choice. For many parents, community-based care isn't a viable option. “Parents who keep their children at home have a lot of struggles getting services and advocating for their child, partially because parents just don't know where to go for help,” she says. “A lot of parents just don't have the resources” to handle the every day demands of caring for a child with a developmental disability, especially when it is coupled with complicated medical problems. “Some parents just can't handle the medical challenges. They don't know what to do in an emergency.”
Adding to the complicated issue of community-based care versus institutional care is that many of these children come from single parent households. “The divorce rate is higher among parents of children with disabilities because of the emotional and financial pain,” Gilbert says.
In a single parent, one-income household “what are you supposed to do if your helper doesn't show up and you can't go to work?” Trager asks. Caring for siblings without disabilities can further strain a single parent's life, leaving them to make the choice to institutionalize the child with a disability so they can adequately care for their other children. “You can't make parents feel guilty if they don't want to or just can't care for these children,” she says.
The Road Ahead
Louisiana, despite a less-than-stellar track record, is taking steps to balance the demand for community-based services with the needs of those receiving institutional care.
Two new state agencies addressing community-based care issues opened in July, the Metropolitan Human Services District and the Florida Parishes Human Services Authority. Their combined budget is $40 million, and their goal is to quickly and efficiently match qualified individuals with mental health and developmental disabilities services.
Channeling funds into these agencies is a triumph for advocates, but a new trend in long-term care may quickly cancel out the gain. An increasing number of private, for-profit nursing homes are opening Medicaid-funded pediatric units designed to house young adults and children with developmental disabilities. Unlike other long-term care institutions, private nursing homes aren't required by law to make sure pediatric residents attend school or receive a basic education, get up out of bed or even to test their ability to eat and drink independently. “They would get a feeding tube and that would be it,” Trager says.
“I worry about the quality of services they will get,” she adds. “For-profit nursing homes and community homes want to make money, and you can't make money caring for sick children, or sick adults for that matter.”
These private nursing facilities will also be competing with institutions, parents and advocates for a smaller pool of dollars in 2005. Louisiana plans to cut Medicaid payments to doctors, nursing homes and institutions and decrease the budget covering services to people who are elderly and disabled by as much as $300 million.
Budget cuts, as well as the ongoing debate between community-based services and institutional care, should raise a red flag for all Louisiana residents. How the state — and society as a whole — plans to care for people with disabilities is an issue that directly affects everyone. “At some time in their life, everyone will run across a person with a disability, whether it is an elderly parent, their own child, nephews, cousins or friends,” Gilbert says. “No one can say it will never affect them personally. At any time, each one of us could acquire a disability through an accident or injury — even just from growing old.”