Sunday, February 19, 2012

Feds: No choice for disabled residents of Va.'s institutions | Feb 19, 2012

Written by Maria Longley | newsleader.com

Virginia's problem with caring for people with intellectual disabilities isn't so much the number that are in institutions — it's that those residents don't really have a choice about where to be, federal officials say.

Those officials, who this year won Virginia's agreement to beef up community care, say that settlement won't force people out of institutions if they don't want to leave.

But the agreement lays out a plan to change the state system from heavily reliant on large, costly institutions to one that enables mentally disabled people to live, work and participate in their communities.

A major piece of the plan calls for the state to work closely with the 1,000-plus residents of Virginia's five training centers and their representatives to offer safe and meaningful residential options with the care and supports that meet their needs.

It won't be easy. Some family members — especially those speaking for severely disabled, medically fragile residents — have strenuously opposed the closure of training centers. They say their family members get top-quality care at the training centers — and some say the community-based care they've accessed in the past was subpar in quality and quantity.

The Illinois-based organization VOR, which opposes the closure of institutions but supports the expansion of community-based services, has said the Virginia settlement should be reversed so that training center residents and their families can "reclaim true choice" and to "protect them from predictable tragedies."

Justice Department officials and advocates of closing state institutions say the fear of some families and guardians is understandable. But they add the settlement itself doesn't require the closure of the training centers, nor does it force any residents to leave if they choose not to.

"What we've seen in other states is that there is an initial fear," said Alison Barkoff, a special counsel at the Justice Department. "I think Virginia is at a disadvantage because it is one of (five) states that has not closed any institutions. This is what other states went through 20 years ago."

Barkoff said some families and representatives described experiences with poor care in the community that took place many years ago to Justice Department attorneys, but added the agreement aims to strengthen, broaden and improve community care.

"I think there has been a huge misperception about what the agreement requires," Barkoff said. "It is a 10-year agreement requiring the state to expand community-based services. It's up to the state to develop the plan."

Federal attorneys and the state began negotiations a year ago, when the Justice Department issued a blistering findings letter based on a two-year investigation of Central Virginia Training Center, the institution that serves the Valley, and then the state's overall system of care. Civil rights attorneys and consultants accused Virginia of multiple failures in care that have led to "needless and prolonged" institutionalization of disabled people.

The settlement has two overriding goals. It's meant to give relief to people with disabilities in the community who are on waiting lists to receive funding for services and support. About 7,000 people are waiting for Medicaid waivers, and almost half are on urgent lists because they are at risk of winding up in intermediate care institutions or nursing homes.

The other goal is to give people in institutions a chance at a life in which they are part of the community.

Recent reports from the Department of Behavioral Health and Developmental Services describe the inevitable closure of training centers because of a steady decline in population as more people have chosen to leave training centers.

The annual cost per year for a resident at a training center averages $216,000, which includes direct services, administrative support and high infrastructure requirements. The average cost of a Medicaid waiver for a person who lives in a community group home is $95,000 per person per year.

Built to house 6,000 residents, the five centers are operating with just over 1,000.

Virginia Gov. Bob McDonnell and Secretary of Health William Hazel "understand that community-based services have been historically underfunded in this state," Barkoff said.

State officials have said funds from the large, less-efficient institutions will be redirected to the community services as training center populations decline.

'Options respected'

No one can be forced to leave a training center if the community they want to live in doesn't have a placement with a provider that can deliver a level of care and supports that are as good or better than what residents are receiving at the training centers, Barkoff said.

"We have lots of mechanisms to make sure people are safe, that they are getting the services they need," she said.

The agreement spells out a discharge planning process that must revolve around the needs and choices of residents and families as members of their own "personal support team."

The team investigates what providers can get the supports and services, and arrange to visit them as well as meet with other families and people who are receiving similar services in the community.

The settlement also requires unprecedented protections against the potential for abusive or unsafe practices or neglectful care.

At the state level, follow-up monitoring of people who've moved out of training centers must take place after 30, 60 and 90 days.

The state also has to implement regional quality councils that will be responsible for identifying gaps in community services.

Community integration managers at each training center will help with communication and planning between each resident's personal support team, the families and private providers about anything involving their move into the community.

"Options and choices must be respected," Barkoff said. "Institutional choice will be available to people who want it. It won't be the default, but that's why there are multiples layers of review. If people say they want a large congregate setting, the community integration manager will review and ask why is this person is being recommended to an institution."

# http://www.newsleader.com/article/20120219/NEWS01/202190344/Feds-No-choice-disabled-residents-Va-s-institutions

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