By Paul Salasky from the Daily Press:

More than 3,600 Virginians with intellectual disabilities are on an "urgent" needs waiting list for a coveted ID/MR Medicaid waiver which would provide them the range of services and support they need. They have cerebral palsy and autism, Down Syndrome, spina bifida and schizophrenia, mild mental retardation and extreme intellectual disability. All require round-the-clock, nonstop care and supervision.
Death of a loved one, divorce or deployment can wreak havoc in any family. Add in loss of employment or illness, and for those with disabilities, such situations amount to a crisis.
On the Peninsula alone, more than 120 such families are on the "urgent" waiting list for an ID waiver. (Waiting in the wings are many, many more whose needs are deemed non-urgent.)
Typically, Medicaid waiver slots become available at the rate of perhaps one or two a month as recipients die or move into a nursing home.
On July 1, as the state's annual budget kicked in, 300 additional ID waivers, the gold standard for care for those with disabilities, became available.

How waivers are allotted
Ten days before, nine employees of the Hampton-Newport News Community Services Board, including nurses, supervisors, day services personnel, those involved with children and adolescents, and a parent representative hunkered around a table. They spent the next five hours in conference to determine who would receive the 10 new slots the board snagged from the state's 300 — plus another three recently released.
For the 13 waivers, they consider the situations of 28 of the 127 families in their catchment area with the most urgent needs. The Department of Behavioral Health and Human Services has a formula for the number of cases to be considered — roughly double the number of slots available — and a couple of years ago it established a standardized, anonymous Tier 2 review system. "We're all working from the same framework now. It's much better," says Natale Ward, senior director, intellectual disabilities services, for the community services board. "It's much more objective."
The meeting kicks off with Carol McCarthy, adult case management clinical administrator, reminding staff about the anonymity of the process, with clients identified only by a seven-digit number. She goes over the scoring process and assigns tabulators. Each participant has had a week to review information packets on each person.
In a measured, steady stream, 19 case managers, some representing more than one person, then take turns to present their client's case and answer questions.
Scorers want to know medical details and what type of help, if any, they're receiving currently. And what type of services they are seeking, whether residential housing, employment, day services or a combination. Many times they pitch in with suggestions — in the event the client doesn't obtain a waiver — for alternative piecemeal support. They note follow-up actions to take, and suggest other resources. If asking for group home placement, they want to know how the client would fit in, particularly in cases of aggressive behavior.
The safety of the client and caregiver are recurring topics. Many cases involve the aging or terminal illness of primary caretakers, others the aging out of the school system by clients. Many involve inadequate living arrangements and the economic fallout from family members having to quit work in order to take on the role of caretaker.

New waiver slots
Those around the table are buoyed by the unusual number of waivers to assign, but somber about the parade of need and the small dent they will make in the urgent waiting list. "They all have such dire needs," says Ward, a veteran of the process, after reviewing the first handful of cases.
The relative bonanza is fueled by a Department of Justice settlement with the state charging Virginia with changing the way it cares for residents with mental disabilities. Accordingly, over the next 10 years, the state must fund 4,170 new waivers for community care. This year, the settlement calls for 225 and the legislature sprang for another 75; in 2013, it must fund another 225, with similar numbers for subsequent years.
"I'm not sure I'll ever be satisfied with the number of waiver slots by the settlement or General Assembly. Those waiting have needs," says Chuck Hall, executive director of the Hampton-Newport News Community Services Board. "You are truly out of luck if you're in the community without a waiver."
The waivers are divided among the state's 40 community services boards according to the numbers on their "urgent" waiting list. Case managers conduct a standardized Tier 1 survey that takes into consideration homelessness, the age of the caregiver, and behavioral issues, among other factors, to establish a hierarchy of need.

Overwhelming needs
The only pattern in these 28 cases is the need. The clients are young, middle-aged and old, African-American and white, men, women and children, and the caretakers likewise range from mid-20s to decades past Social Security eligibility.
No simple solutions are at the ready as the professionals bemoan the cutback in respite hours — from 720 to 480 per year — that has put many families in a bind. Or that the EDCD waiver, Elderly or Disabled with Consumer Direction, often used as a stopgap, doesn't include vital transportation, and that its medical requirement also excludes many who could benefit from its services.
Two years ago the General Assembly reduced state general grant funds that the Hampton-Newport News board used to support 100 individuals waiting for waivers to fund a Day Support Voucher program in partnership with the Arc of the Peninsula; it had to pass on the cuts. "It was a double whammy for those in the community," says Hall.
Only immediate need, rather than length of time on the waiting list, factors into the scoring process. One case manager says softly of her client, "I've been trying for years to get him a waiver slot." This time she's successful.
Nearing the end, and knowing that more than half those considered will not receive an ID/MR waiver, McCarthy says, "It's tugging at me a little bit." In an ideal world, she'd like to see a voucher system to help everyone get their needs met.

ID/MR Waiver
The services included with this Medicaid waiver include residential support services, day support, employment, personal assistance, respite and companion services, assistive technology, environmental modifications, skilled nursing, crisis stabilization, and support coordination.
Eligibility: Person must qualify for placement in an ICF, intermediate care facility, based on a "level of functioning" survey.
For information on the number of waiver slots assigned by the Department of Justice settlement, go here: