Virginia budget plans cut requested funding for independent living supports, advocates say

After 40 years, the ARC of Augusta had to close its day support program last week — a place where people could break the isolation a developmental disability often imposes, spend time with friends and work to refine skills needed to live independently.

Most important, have the kind of support that lets people with disabilities keep living in the community ― not in a nursing home or other institution.

The program was just the latest in a steady decline of such community services, as Virginia’s underfunding of the programs means many can’t afford to stay open.

The latest versions of the budget coming from the House of Delegates and state Senate — with the Senate cutting the increase in the number of slots for Medicaid-funded support services from 1,200 to 600 — are a step backward, said Jesse Monroe, a Norfolk advocate. Monroe has arthrogriphosis, a contraction of tissues in his joints that keep him from extending his arms and legs. He lives in an apartment with support from the nonprofit independent living agency Hope House.

There are about 3,400 people on Medicaid’s “priority one” waiting list for support service funding through its Home and Community Based Services program. There’s another 10,000 with less urgent needs also on waiting lists.

On the priority one list, a typical situation is a 50-year-old who is cared for by a parent in his or her late 70s.

The worry is that without the funds in place and planning in the works, the 50-year-old could end up homeless or in such bad physical shape that they would have to be hospitalized or sent to a nursing home, said Tonya Miller, executive director of the ARC of Virginia. The cost is a lot higher than those Medicaid-funded supports.

“The system of HCBS supports is literally crumbling. And, the budgets that have come out of the House and Senate are pushing us closer to the edge,” said Grey Persons, advocacy coordinator at Hope House.

Because the rates Virginia’s Medicaid agency pays for such supports are low, nonprofits often can’t match the pay people get for doing the same sorts of jobs in nursing homes or large, institution-like adult homes.

Over the years, Monroe has counted on being able to call into a smart speaker and get someone from the Hope House office upstairs to come down to his place to lend a hand.

But now, “Sometimes, there’s no staff; staff are very overworked,” he said.

Since he doesn’t drive, that means “I’ve missed doctors appointments. I miss our outings, I’ve missed visiting my family.”

After Virginia last year missed the deadline on its promise to the U.S. Department of Justice to bring its community services system for people with intellectual and developmental disabilities into compliance with federal civil rights law, advocates called on the General Assembly to boost funding for such supports.

In all, it was a package meant to peg the fees nonprofit agencies get at 75% of what Medicaid pays for the same kind of care at state hospitals or through local and regional Community Services Boards or private for-profit providers.

Doing that would have cost the state about $168 million over the next two years. Most of the rate increases the advocates proposed ranged between 32% to 45%; the biggest was a more than doubling in a service called consumer-directed facilitators ― basically someone to step in with individuals like Monroe wanted to arrange for a support, to help handle the often complicated paperwork.

The advocates also called for big increases, of 95% for a support programs for people with disabilities who live independently.

The House and Senate knocked most back by about 15 percentage points — still an increase but one that pegged nonprofits’ reimbursement at 50% of the state, CSB and for-profit operators. Both bodies cut the independent living service rate increase by 34 points from what advocates requested.

The House cut out any increase for the facilitators, as well as for a series of other relatively low cost advisors offering help as people with disabilities looked for work or other supports.

The Senate cut several of these, but did agree to a 12.5% increase for the facilitators. But the Senate cut the advocates proposed 91% increase for skilled nursing services by 50 percentage points.

The net result was that the House cut the $168 million bill in half. The Senate cut it to $28 million.

Up in the central Shenandoah Valley, it fell to ARC of Augusta’s Warren McKeen to break the news that after 40 years, the region’s only day support program had to close its doors.

“One individual asked me asked ‘when can I come back?’” he said. “And cried when I told her that she would not be coming back.”

Dave Ress, 757-247-4535,