ORANGE COUNTY — Heather Jolley worries each day that it will be the one that breaks her.
Three girls under age 6 would be enough to test any parents, but Heather and Jason Jolley have been dealt a tougher challenge. The oldest, 5-year-old Abigail, has the mind of an infant; she is plagued with such severe autism that she can’t speak or eat solid food.
Allie, the baby at age 3, also has autism. For the Jolleys, each morning is a mindless grind of diapers and sippy cups and near meltdowns.
“It’s stressful from the moment you wake up,” Heather Jolley said. “If I miss one thing, it throws everything off.”
The state knows how challenging a single day can be for families that care for those with special needs. And as the country has tried to abandon the old model of shipping those with disabilities to sterile institutions far from home, states have carved out programs to help these families stay healthy and together at home.
But demand for at-home assistance, paid out through Medicaid, has far outstripped capacity in North Carolina. Now, nearly as many families are waiting for help as there are families getting it.
Roughly 10,600 people with cognitive and physical disabilities get at-home services and therapies at a cost of about $517 million a year, a third of that coming from state dollars. More than 9,000 people across the state wait for help from behavioral or occupational therapists or simply a trained caregiver to offer a few hours respite.
In counties such as Wake, the wait for services tops eight years. Slots rarely open up, and in recent years, the few slots that did were frozen to save money. No new spots have been added since 2009.
“We have many people who’ve gone without help for far too long, and they are in a terrible situation,” said Suzanne Goerger, who coordinates services for families in Wake, Durham, Johnston and Cumberland counties through Alliance Behavioral Healthcare. “These waits are painful.”
Providing care to the more than 9,000 people with disabilities waiting would be a significant undertaking, one that seems nearly impossible as legislators try to rein in soaring Medicaid costs. Though the program has many champions, even among fiscal conservatives who write the budget, absorbing the needs of those waiting for care could reach nearly a half-billion dollars annually and doesn’t factor in other medical needs such as hospital stays that would then be paid by Medicaid.
Unlike Medicaid insurance for the poor, these community waivers for families with disabilities aren’t considered an entitlement. That means that even though people may qualify, they will only get help if money is available. The program also serves families considered middle class because eligibility is based on the income of the disabled family member. State Medicaid leaders constantly ask legislators for more slots.
“Of course, we’re all social workers and we’d like more funding to serve more people,” said Kelly Crosbie, head of special needs services at the state Division of Medicaid Assistance.
Without dramatic growth in the program, some fear families may slip back into the position of having to consider sending their children away to an institution.
“We are putting families in situations where they may fail, and only when they are in full-blown crisis offer them some sort of emergency care,” said Vicki Smith, director of Disability Rights North Carolina.
The Jolleys have vowed to care for their children at home as long as they possibly can. But as Heather Jolley’s body aches after holding a fitful Abigail through another sleepless night, she worries.
“Down the road, if you continue to not have services, you just don’t know what you can handle,” she said. “My daughter’s gonna get bigger and stronger, and I’m not. You don’t know if the body can survive that.”
Squeezing the budget
For families with fragile loved ones, getting help can present a bureaucratic nightmare. The system is littered with acronyms and even finding the right agency to make an application can prove difficult. Community programs and at-home support are supposed to pave the way for this new generation of families caring for relatives to manage their needs at home.
The program was born, in part, in an effort to find a cheaper way to care for the disabled. Medicaid was picking up the tab for institutional care, so in the early 1980s, the federal government told states they could offer help at home to families whose loved ones were disabled enough to need institutional care.
To qualify for the services now, families must show that their loved one requires the kind of care given at an intermediate care facility.
Those services are still cheaper than a bed in a state-run institution for the disabled. The average cost in North Carolina for a year of institutional care at a state facility such as Murdoch Developmental Center in Butner is $120,000. Services offered at home and in the community typically cost a third of that
Despite the cost-saving appeal of these programs, legislators have struggled to redirect funds to these types of services. They have been forced to focus on services they must provide, such as health care to poor children and nursing homes for the old.
Medicaid is a nearly untenable budget item in North Carolina. Enrollment in the insurance program for the poor, elderly and disabled has grown while state revenues plummeted. This year, $13.3 billion in state and federal dollars will be devoted to Medicaid, and in recent years, legislators have had to find an additional $100 million to fund the program.
“If you have all the money in the world, the question is answered simply: Open the doors,” said Patricia Porter, a former health and human services official who now consults with legislators on Medicaid programs for the disabled. “It’s just not possible financially to give everybody everything they want. The General Assembly has to find the right balance.”
A reluctant move
Heather and Jason Jolley are smart people who nurtured promising careers. Jason, 36, works at the Kenan Institute at UNC-Chapel Hill, using his doctorate in business to research economic development in local communities. Heather worked for many years as a nurse; the couple had planned for Heather, 35, to pursue a degree as a nurse practitioner when they learned they were pregnant with their first baby.
Heather had a tough pregnancy, and doctors ordered her to bed at six months. She was forced to quit work.
The Jolleys knew pretty quickly that Abigail wasn’t growing and developing typically. Her motor skills seemed delayed. She rocked to soothe herself. She barely slept and when she woke, she was aggressive. Doctors diagnosed Abigail with autism before she turned 2.
As Heather contemplated going back to work, she searched for a day care for Abigail. None would accept a child with such special needs.
As the Jolleys figured out how to manage their growing family on Jason’s salary, Heather settled into a routine as an around-the-clock caregiver. Because Abigail hardly sleeps, Heather and Jason take turns sitting up with her at night to keep Abigail quiet enough that the other two girls can sleep.
In six years, Heather said she can count on one hand the nights when she got more than four hours of sleep. She’s developed migraines and her doctor fusses at her to take better care of herself.
“Our life revolves around autism and our daughters’ needs,” Heather said. “You lose yourself.”
Four years ago, Heather and Jason signed up for the Medicaid community program that could provide behavioral and occupational therapy that their private insurance won’t cover for Abigail.
“I never imagined us as a family that financially would need to get this sort of help,” Jason Jolley said. “But we simply can’t stay afloat and pay for these therapies that doctors recommend.”
The Jolleys were warned about the long wait for services, but they never imagined it would take this long. Heather called this year to inquire whether Abigail and Allie had progressed on the waiting list. They hadn’t.
The Jolleys had to make a tough choice this fall. Jason Jolley looked for a job in a state with better care and opportunities for their daughters.
A university in Ohio offered Jason Jolley a teaching position. While the pay isn’t dramatically better, the insurance the university provides will pay for some of the therapies Abigail and Allie need for their autism. And, in the school system, Abigail will have a one-on-one aide even though she’ll never be able to integrate into a mainstream class. They plan to move this winter.
“We never meant to leave,” Heather Jolley said. “We didn’t want to, but you can’t constantly feel like you are failing your children.”
A push into poverty
State Rep. Nelson Dollar, a Wake County Republican who helps write the budget, said he wishes the state could devote more money to the program the Jolleys need.
“Everyone who knows these individuals and their families see what they go through and sees how they struggle on a daily basis,” Dollar said. “No one questions our use of resources to help them, and I wish we could do more. As resources grow in the state, that’s an issue we’ll need to address.”
Until then, legislators are trying to reform the way services are given out. By having central agencies manage care for those eligible, legislators hope to redistribute services away from those who may be getting more help than they need. Resources saved will be given to families on the waiting list.
Time will tell how many new families will be served, but state officials are realistic about this not being a solution to the untenable waiting list. Meanwhile, families already enrolled in the program fear they’ll lose help they need.
Dollar said trying to make more use of the limited money the state can devote to the program makes sense.
“We’re trying to make sure we’re using the money fairly to try to help as many people as we can,” Dollar said.
Advocates worry that the 9,000-person wait list doesn’t even reflect the real need.
“Many folks haven’t even tapped into the system. Many families are shouldering this on their own with no supports,” said Chris Egan, a training coordinator for community-based support at the University of North Carolina School of Social Work. “But eventually, as the parents age, they’ll reach a critical point, too, especially if they don’t have a plan.”
While some complain that the program is too broad and is open to families who can’t typically tap into government support, advocates say that simply having a special-needs child can push a stable middle-class family into poverty.
“Families who are middle class or upper middle class struggle financially to support their loved one,” Egan said. “They don’t have as much ability to earn as they manage care for their loved one. Even if you have two working parents and they have found some support, these families are living right on the edge.”