Wait-listed: Budget woes blamed for delays serving people with brain injuries
The phone call in September gave Carol Albert some hope: After years on a waiting list, her daughter Casey seemed poised to get a spot in a state program for people with brain injuries.
That would allow Casey, 23, to move into an apartment and have aides who could help address her needs. It would take some responsibility off Albert, who frequently misses work because of her daughterâ€™s needs and monitors Casey nearly constantly the rest of the time. And it couldnâ€™t come soon enough: Caseyâ€™s mental and physical health are deteriorating, her mother said.
But after getting her daughterâ€™s paperwork and plans in order, Albert said she was told by the state Department of Social Services that Casey wasnâ€™t coming off the waiting list yet.
Although the program had a waiting list of 25 people as of Jan. 28 and 13 open slots, department officials say they don’t have the money or staff to serveÂ 13 more people.
Waiting lists are not uncommon in programs likeÂ the one the Alberts are waiting for, known as Medicaid waivers. But advocates have questioned whether the state is violating the terms of the brain injury waiver by not filling open slots, and one advocate has asked the federal government to intercede and force the state to fill them.
The stateâ€™s Office of Protection and Advocacy for Persons with Disabilities has also raised concerns about people on the waiting list goingÂ unserved â€“ particularly since there are another 98 slots that have been reserved for, but so far unfilled by, people already receiving otherÂ publicly funded services.
Typically, when people are on wait lists, families provide care, said Nancy Alisberg, the officeâ€™s managing attorney.
â€śIt can mean that caregivers have to quit jobs so that they can provide services. It means that people are usually not getting the services that they need and that they are entitled to,â€ť Alisberg said.
Officials at the Department of Social Services say the state is not obligated to fill all the slots. Still, they say they could begin filling one per month â€“ if they have the money and get approval to outsource care management responsibilities in the program, somethingÂ legislators rejected in December.
The dispute comes as Gov. Dannel P. Malloyâ€™s administration seeks deep cuts from state human service agencies to address a projected $570 million budget deficit and what officials characterize as an economy that canâ€™t support the type of state spending Connecticut has historically had.
Albert sees her daughterâ€™s care as a casualty of the stateâ€™s tight budget: If the department doesnâ€™t fill the program, she said, there will be extra money to address theÂ funding shortfall.
â€śIn the meantime, Iâ€™m struggling,â€ť said Albert, who lives in Columbia and whose daughter has had a brain injury since age 5, the year after Albertâ€™s husband died. She said she told DSS officials, â€śIâ€™m either going to end up institutionalized or my daughter will, because this is becoming way too much for me.â€ť
A contentious topic
The handling of the stateâ€™s program for people with brain injuries has been a major source of contention in recent years.
The program is a Medicaid waiver â€“ an add-on to the Medicaid program that allows the state to cover people with specific needs who might not otherwise qualify. The federal government reimburses the state for a portion of the programâ€™s costs.
While Medicaid is an entitlement, meaning the state must grant coverage to anyone who meets eligibility rules, states can limit the number of people served by Medicaid waivers. The waiver Casey Albert is wait listed for, for example, has 180 slots this year.
But whether the terms of the brain injury waiver allow the state to leave some of those slots unfilled has become one of the latest points of dispute between state officials and critics of the way theyâ€™re handling the program.
The state actually has two waivers for people with acquired brain injuries, intended to help them live in the community.
The first began inÂ 1999. As ofÂ 2014, it covered more than 340 people, spendingÂ an average of $96,382 per person. Another 49 people were on a waiting list; it could take them more than three years to receive services.
At the same time, some people with brain injuries, including some on the waiting list, were receiving services from the Department of Mental Health and Addiction Services, or DMHAS, at the stateâ€™s full expense, about $10.5 million in 2014. Other people with brain injuries who werenâ€™t covered by the waiver were in nursing homes.
In 2014, DSS proposed a change: closing the existing brain injury waiver to new clients and creating a new one that could serve those whose services were paid for by DMHAS, allowing the state to get millions of federal dollars toward their care. It would also allow people in nursing homes to move into the community and cut down on the waiverâ€™s waiving list, officials said at the time.
Many people with brain injuries and advocates opposed the plan, worried that it could jeopardize the original waiver, which must meet certain cost requirements under federal rules. And since many slots in the new waiver would be reserved for those already receiving services, critics charged that people already getting help would beÂ taking spaces that could go to thoseÂ who had been waiting.
Still, the plan moved forward. This year, the new waiver has 180 slots, 139 of which are reserved for people who had been in nursing homes or receiving DMHAS-funded services. Currently, 41 of those 139 slots are filled, according to DSS.
Of the 41 slots available to people like Casey Albert who are not in a nursing home or receiving DMHAS-funded services,Â 13 remainÂ open.
By not filling thoseÂ 13 slots, saysÂ Elaine Burns, president of the Connecticut Brain Injury Support Network, the state has violated theÂ terms of the waiver.
â€śWe canâ€™t find the authority for them to manage it in this manner,â€ť she said. â€śItâ€™s crucial that at least those 13 people get services. Theyâ€™re just languishing.â€ť
State officials have said there isnâ€™t money or staffing to fill the 13 slots â€“ and they say DSS isnâ€™t obligated to make all the waiver slots available.
Social Services Commissioner Roderick L. Bremby wrote to Burns in December that funding for the new waiver depends on attrition from the original waiver. When the new waiver’s budget was developed, he wrote, it was assumed that approximately 13 people would leave the old waiver each year.
And Bremby and Benjamin Barnes, Malloyâ€™s budget director, wrote to Burns last month that while Medicaid waiver documents list the maximum number of people who will be served at a time, â€ścapacity to fill any and all waiver slots is dependent on sufficient appropriation of the state share of funds for such slots.â€ť
They pointed to two other Medicaid waivers â€“ one serving people with developmental disabilities and one, known as the Katie Beckett waiver, that serves children with severe disabilities â€“ for which the number of people servedÂ is based on how much funding has been budgeted, not the number of slots allowed under the waiver.
Burns has questioned both points. TheÂ documents for the two other waivers include language allowing the state to limit the number of participants to fewer than the maximum number of slots, while the acquired brain injury waiver does not, she said. And Burns said nothing in the new brain injury waiver indicates that its funding depends on attrition from the old waiver.
Asked to point to the authority the state has to not fill all waiver slots, DSS spokesman David Dearborn said, â€śA waiver is a permissive document and is not an entitlement.â€ť
As for the reserved slots, DSS officials said in a fact sheet dated Feb. 3 that since they are meant for people whose services are already publicly funded, reducing the number of reserved slots wouldnâ€™t free up funding to serve people on the waiting list.
DSS: Linked to rejected outsourcing plan
Still, that fact sheet indicated that the department could serve one new client per month through the new waiver â€“ â€śdependent on budget availabilityâ€ť and upon approval of a plan to contract care management services to an outside agency.
The latter part refers to a proposal by the department to outsource care management in the program. Officials say itâ€™s necessary because the workload of DSS social workers has increased dramatically, and competing obligations with other work have made the social workers unable to perform annual reassessments of the program on a timely basis, as federal law requires. The department says it canâ€™t hire more social workers because of a hiring freeze and other budget constraints.
But legislators on the Human Services and Appropriations Committees â€“ many of whom cited concerns about the process involved â€“ rejected DSS’ proposalÂ in December. The department plans to seek approval again.
Burns questioned the idea of linking the departmentâ€™s ability to fill slots to approval for the care management contract. She questioned whether staff were really as stretched as the department has said, and said that staffing shortages and a hiring freeze are within the ability of the administration to correct.
At a time of budget-cutting, would DSSÂ have the funds to serve people on the waiting list, even if the care management plan were approved?
Once the department has a contract in place to outsource the care management, Dearborn said, â€śWe are optimistic that funding will be available in current and future appropriations to support our proposal to add one person per monthâ€ť through the end of the year.
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