Bid at assessing disability draws flak in Virginia
Cost-cutting shortchanges patients, their families say
Out of more than 10,000 assessments conducted so far, 22 patients have sought new assessments.
A Virginia effort to bring state-funded services to thousands more disabled people could jeopardize funding for those who are already receiving support, advocates for the disabled say.
State health officials have been trying to cut into an 11,000-person wait list for services paid for with Medicaid vouchers, part of a broader effort to comply with the terms of a 2012 federal court settlement that, under the Americans With Disabilities Act, requires the state to find a way to allow more people with disabilities to live and work in community environments rather than institutional settings.
Faced with an increasing demand for services, the Department of Behavioral Health and Developmental Services has started to use an assessment of individual patients’ needs known as the Supports Intensity Scale to help determine funding levels.
The assessments have led to a reduction in state reimbursement rates by as much as half in some cases, prompting concern from family members and advocates about the quality of care people with disabilities will receive when the new rates take effect in January.
“This has pretty big implications,” said Lucy Beadnell, director of advocacy for the Arc of Northern Virginia, a nonprofit group for the disabled. “There have been lots of complaints from families.”
State health officials say the assessments — to be conducted every three years for adults and every two years for children — are part of Virginia’s overhaul of its system of Medicaid waivers, which covers about 12,000 people with intellectual and developmental disabilities.
State officials aim to increase the number of people served by waivers to about 16,000 by 2021, using money that is being appropriated to comply with the court settlement — currently $112 million. The assessments, which are used by 22 states in the country, are supposed to determine more accurately who is in need of more services and who can function more independently.
Previously, funding levels for patients with disabilities were largely determined by a local case manager, who generally advocated for as much aid as possible, officials said. The new approach, promoted by the American Association on Intellectual and Developmental Disabilities, is more formulaic.
State-contracted interviewers meet with the patient, family members and service providers and ask as many as 100 questions about medical needs and the person’s ability to function independently at home, at work and out in the community.
The answers, plus any other documentation detailing previous services, are supposed to determine which of four funding tiers is appropriate, with the lowest level indicating minimal care and the highest reserved for people with severe behavioral problems.
Because the state does not allow assessment scores to be appealed unless there is evidence that standard procedures were not followed, it is hard to determine how many assessments may be flawed, advocates say. Out of more than 10,000 assessments conducted so far, 22 patients have sought new assessments. Two of those were successful in arguing that the manner in which their assessments were done was flawed, according to state officials.
Leila McDowell, of Upper Marlboro, Md., tried to appeal her daughter’s assessment after the new evaluation system concluded that she has moderate support needs despite a severe form of autism that causes frequent seizures.
Among other things, the new assessment determined that McDowell’s daughter, Layla Head, who lives with her caretaker in Sterling, Va., required just six hours of care per year for her seizures instead of the 21 hours for which her full-time caregiver is reimbursed.
Reimbursement rates for other services, such as helping the 33-year-old eat, dress herself and bathe also dropped. As a result, the annual reimbursement for Sharon Adams, her full-time caregiver, will go from $96,000 to $60,000 once the new rates go into effect in January.
Purcellville, Va., resident Linda Kidder said the assessment meeting for her 41-yearold son was confrontational. The interviewer, she said, frequently dismissed the fact that Matt Kidder, who was born with cerebral palsy and has limited speech, needs help from caregivers at his group home and his day-support program for nearly everything he does.
“She’d ask: ‘Can he dress himself?’ and we’d say, ‘Yes, but he needs assistance. He needs someone to pick out his clothes, someone standing next to him,’ ” Kidder said. “All she heard was ‘Yes.’”
Matt Kidder was ultimately assessed as a Tier 1 patient, or someone who is mostly independent, a designation his mother has also appealed without success.
“This person met Matt,” Kidder said of the interviewer conducting the assessment. “How these scores could have come out the way they did is just unbelievable.”
Jennifer Fidura, executive director of the Virginia Network of Private Providers Inc., said the organization is lobbying the General Assembly to fund a study that would re-examine the reliability of the assessments in Virginia. That effort is partly motivated by a 2015 federal court settlement in New Mexico that allowed patients whose funding was reduced after an assessment to return to their previous levels of service.
Virginia’s assessment system is slightly different than New Mexico’s in that it determines the level of need and reimbursement rates, rather than what kinds of services someone can receive. But Fidura said there have been enough questions raised about the Virginia process to merit another look into whether it is a legitimate way to determine funding.