Jerome McDermott has never considered the decades-long task of caring for his quadriplegic son, Andrew a burden. Even as McDermott has daily bathed and dressed Andrew, who has cerebral palsy and is now 42, he has seen it as part of his duty as a parent.
But for several years, McDermott, 69, has had difficulty doing some of the basics: from lifting his son in and out of his wheelchair several times a day, to bathing him in the mornings. The physical labor of caring for Andrew, who weighs about 115 pounds, led to a hernia several years ago and periodic muscle strains for McDermott, a former Marine who is retired.
That's why the news from Richmond earlier this month was a relief: Andrew McDermott is finally in line to receive long overdue services from the state, now that lawmakers have dramatically expanded a program that provides community care to the mentally disabled.
The program, which is part of Medicaid and is matched dollar for dollar by federal money, has been under-funded in Virginia for a decade, leading to hundreds of elderly Virginians having to care for their adult mentally disabled children.
"This is the most hope we've had in a long time," said McDermott, who lives in Herndon along with his wife, Roberta, 60, Andrew's stepmother.
Getting his son into a group home in the Herndon community "will not only help us because we're getting on in years, but will also allow Andy to have more independence," McDermott said.
One of the major issues the Virginia General Assembly struggled with as lawmakers crafted their two-year budget this spring was funding health care, in particular the future of the state program that transfers the mentally disabled out of institutions and into group homes.
As part of the $60 billion budget passed this month, lawmakers approved funding for 860 mentally disabled patients to live in group homes in their communities. The places will come available over a two-year span.
At $40 million, the funding is the most the program has ever gotten from the state, advocates said. The money covers not only group home care but also help for people who don't need as much supervision and can receive services in their homes.
The funding should help whittle down a waiting list of the neediest cases that had grown to 1,300 as of January. An additional 2,000 people remain on a second waiting list of somewhat less needy cases.
The first places will become available this summer, state officials said.
"It's been basically a little money here and a little money there," said Teja Stokes, executive director of the Arc of Virginia, an organization that advocates for the mentally disabled. With limited funding, the state had granted about 175 slots last year and about 150 the year before. "The standard has been a Band-Aid approach," Stokes said. "This year is much different"
The new places will mean that families such as the McDermotts will be able to move their children into group homes, close to or in their own communities. There are more than 120 such families in Fairfax and Falls Church for instance; several hundred more are scattered across Northern Virginia, according to state records.
Many families on the waiting list have not been receiving any state-funded services. In the McDermotts' case, a home health care worker visited the family eight hours a week -- not enough to really help Jerome McDermott take care of Andrew's daily needs.
"These families really have nowhere else to turn," said Sen. Janet D. Howell (D-Fairfax), a member of the Senate Finance Committee, which pushed for the expanded program this year. "When we talked of funding core services this year in the Senate, it is these families that we were talking about."
The additional slots also mean that about 200 mentally retarded individuals will be moved from institutions and into their home communities. For years, advocates say, Virginia has also been slow to move people with mental disabilities out of institutions when they are eligible: A state study found several years ago that about one in four people with mental retardation and developmental disabilities lived in institutions in 2002, which was twice the national rate.
Several advocates said that the state has been on the brink of violating federal standards by not moving people out of institutions fast enough.
But there are still hurdles in supplying the necessary services to the mentally disabled. Even though funding for more group home placements will be available this summer, each locality will have to scramble to find manpower -- nurses and health aids -- to serve these patients.
The challenges are greatest in Northern Virginia, where the cost of housing, wages and everything else is higher.
"Finding people to work in the field -- particularly in Northern Virginia, is very, very hard," said Mary Ann Bergeron, executive director of the Virginia Association of Community Service Boards, which supervises the local agencies that help manage the waiver program for cities and counties. "It's going to be a challenge even though we now have the slots."
In addition, advocates and lawmakers point out that still more mentally disabled people are on the waiting list and that the list will continue to grow. The urgent care list grew from about 970 to 1,300 in six months at the end of last year.
"We still have work to do," said Sen. William C. Wampler (R-Bristol), one of the chief advocates for the program in the Senate. This list will continue to grow, and we're probably going to have to play catch-up again."
Like several other lawmakers, he said this year's effort was a start. "We're getting there," he said.