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The Price of Care 

NC families fight to keep developmentally disabled loved ones where they belong -- at home

Polly Medlicott is an extraordinary example of how North Carolina's Community Alternative Program (CAP), a federally matched Medicaid system, can work. She is a single parent with a daughter in college and a 17-year-old son, Christian, who is one of 6,000 people served through CAP in the state of North Carolina. Christian has cerebral palsy and has been receiving CAP benefits for a year and a half. Polly knows what she wants for her son, as well as what she wants from the program. However, not all of those needs can be met for most families with similar realities because of budget shortfalls and restructuring, as well as federal restrictions that limit how Medicaid recipients are cared for. Until recently, families like the Medlicotts who had members with developmental disabilities had to seek care at intermediate care facilities for the mentally retarded -- government-approved institutions that offer care for up to 350 people -- to gain access to Medicaid. This was federal law, so there was no choice for those who couldn't afford out-of-pocket costs. To receive government support one had to seek the care of an institution. There are five state-run institutions in North Carolina, all located in relatively rural regions of the state: O'Berry Center in Goldsboro; Murdoch Center in Buckner; Caswell Center in Kinston; Western Carolina Center in Morganton; and Black Mountain Center in Black Mountain. In addition to these state-run institutions, private institutions are also covered under the Medicaid program.

With the rise of developmental disabilities in the mid-80s, it was deemed that institutionalization was too expensive to serve every person, because the services offered by the institutions exceeded the needs of most patients. The federal government developed a remedy: Medicaid waiver programs, in which the federal government would match state and local governments on a sliding scale. (The feds currently match North Carolina by a ratio of roughly 70-to-30.)

According to Lisa Haire, acting director for Regional Support Services, "Each state has to be able to match what the federal government hands down based on a formula that the federal government hands them." Every state has a waiver program. North Carolina named its program Community Alternative Program, or CAP.

Programs like CAP, combined with the recent Olmstead Supreme Court decision -- which stated that institutionalization was inhuman and discriminatory toward people with developmental disabilities under the Americans with Disabilities Act -- have pushed movement toward community-based care programs and group homes nationwide. The fact that North Carolina has not complied with the Supreme Court's ruling has made many NC residents, as well as outside observers, concerned.

Unfortunately, North Carolina still relies on institutional care, allotting the majority of its Medicaid money to those antiquated facilities.

"More of our money goes to these institutions," explains Linda Guzman, a chapter and advocacy specialist with the Arc of North Carolina (an advocacy organization established to aid families and those with developmental disabilities). "There are people who want to leave institutions but who can't because these services aren't available in the communities."

Guzman agrees that North Carolina is downsizing its institutions. However, only now is the state beginning to take the matter seriously. As one institutional administrator divulged, "The interesting thing about mental health reform is, and this is just my perspective on it, some of the issues that are being looked at are being forced to be looked at because of the budget situation, but they needed to be looked at anyway. And I kind of believe that if it had not been for the budget crisis, they wouldn't have been looked at. Not only the money, but whether or not there are the best services and to the most needy people and all of that."

According to Nina Yaeger, an employee at the Division of Medical Assistance, North Carolina's "state general fund is forecast to be short by $950 million this year." This is a big motivator for the government to make some changes in how they spend their money.

CAP is a program that offers these services within the community. Polly Medlicott receives help for Christian from a private care nurse, Barry Parker. Parker assists Polly with Christian in the mornings by helping him with his education and physical therapy. Polly found Parker on her own, but normally she would have gone through a private care agency to acquire the type of care a nurse like Parker provides. These provider agencies submit the bill to the Division of Medical Services, and they act as the state's Medicaid agency.

This is one of CAP's glitches. Under the current CAP situation, families are assigned case managers, and those case managers oversee the money each family is allotted. Case managers receive a $500 payment per family each month to assist that family in acquiring services needed by the individual, such as finding a care provider or a physical therapist. The problem with this system is that case managers are private businesses. Since these institutions have to receive payments from the government for their services, they can only pay their employees so much and still turn a profit. The result is that employees hired through those agencies don't remain with any one company for too long, because the pay and the benefits are sub-par. This creates a problem, because caseworkers don't develop a relationship with the families they're serving, which makes it difficult to understand the families' needs. In addition, developmentally disabled people typically take longer to establish the trust of an outsider, and if outsiders are constantly popping in, it becomes distressing for the person who truly needs the care.

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