Life would change dramatically for Belinda Foley and her family if the developmentally disabled woman could no longer live in an Albuquerque group home.
John Foley, her father, said the family was startled last year after a Medicaid evaluation system widely used nationally found that Belinda, 49, had “minimal needs” and judged her capable of living independently without 24-hour support.
A reassessment done at the family’s request changed Belinda’s score to a greater level of disability, raising questions about the new evaluation system.
Called the Supports Intensity Scale, or SIS, the system will be used starting today to determine the service packages for Belinda and about 3,200 adults enrolled in the state’s Medicaid program for disabled New Mexicans.
The program is called the Medicaid developmentally disabled waiver program, commonly called the DD waiver.
As of April 15, about 3,000 adults on the DD waiver had completed the SIS. Of those, about 600 have asked for reassessments. At least two families, including the Foleys, received a significantly different result the second time, leading some to question the validity of the SIS.
“The SIS, if properly administered, will be useful, but we are seeing that it is not,” said Fritzi Hardy, the mother of a disabled woman who receives services through the waiver program.
New Mexico Department of Health officials say they remain committed to the new assessment, which they call a proven tool for determining the needs of people with disabilities.
Cathy Stevenson, director of the agency’s Developmental Disabilities Supports Division, said the assessment’s accuracy relies on people providing realistic answers based on an intimate knowledge of the person being assessed.
“If you don’t have the right people in the room to answer the questions … or people don’t answer the questions honestly or accurately, then you won’t get an accurate result from this assessment,” Stevenson said.
State officials said they do not know how many reassessments resulted in a change in the SIS score or why the score may have changed.
The state has completed about 100 reassessments and is working with two out-of-state organizations to analyze the results, officials said.
“We want people to get the level of support they need — not more, not less,” Stevenson said. Under the old system, “we had increasing costs that could not entirely be explained by having increasing level of need in the population.”
The average cost per person on the DD waiver was about $74,000 in 2012, shared by the state and federal governments, according to a Legislative Finance Committee report.
The state that year paid $95.7 million from the general fund for DD waiver services, an increase of $6 million from the 2011 appropriation. The SIS is part of a cost-containment program implemented by the state in 2011, according to the LFC report. The LFC projects New Mexico’s Medicaid expenditures will reach $4.06 billion next year, up 7 percent from this year. The federal government pays about 70 percent of the state’s Medicaid costs.
Medicaid is a state and federally funded health insurance program for the poor. Over the years, federal officials have “waived” Medicaid eligibility rules to allow states to offer programs, called waiver programs, to serve groups such as the disabled.
About 6,300 people remain on a waiting list for the DD waiver, some for as long as 10 years.
The SIS assessment is intended to help reduce the waiting list “while protecting services for clients already in the program,” Department of Health officials said in a written statement. “The goal is to reduce the number of people on the waiting list … and reduce the amount of time people must wait for services.”
The SIS was developed by a Washington, D.C.-based nonprofit that administers the assessment under contract with the Department of Health. It is paid $825 for each initial SIS assessment and $850 for each reassessment.
Doris Husted, who served on a state committee that selected the SIS, said the state was forced to abandon a decades-old evaluation system because it was no longer available.
Committee members recommended the SIS because they considered it the most effective system available, said Husted, public policy director for ARC of New Mexico, an advocacy group for people with disabilities.
The SIS has been approved for use in New Mexico and nationally by the federal Centers for Medicare and Medicaid Services, but the federal agency did not urge the state to adopt the SIS, state officials said.
Assessors use an eight-page interview form that covers activities such as employment, social health and safety activities, and medical support needs. They then score the amount of support the person requires to perform those activities.
Belinda Foley experienced brain injuries at birth that left her with cognitive disabilities and a variety of medical problems, her father said.
Unable to live alone, Belinda has lived for years in a group residence in Albuquerque that provides 24-hour supervision, John Foley said.
The SIS, which will be phased in over a one-year period, places DD waiver clients into one of seven groups, labeled A through G, with A being the least needy. It assigned Belinda to group A, a group “capable of managing many aspects of their lives independently,” according to state records.
The group A assignment probably would have meant an end to Medicaid payments for group living, John Foley said.
“We were really distressed about what the SIS would mean for her,” he said. “She probably would have had to come home.”
At Foley’s request, the state re-evaluated Belinda in January and this time assigned her to group F, for disabled adults with “extraordinary medical needs.” The group F designation likely assures that Medicaid will continue to pay for Belinda’s care in a group home, he said.
Some DD waiver families say professional care givers familiar with the SIS need to be present to help answer questions during an assessment.
Foley said the key factor that made the difference between the first and second assessments were the people answering the questions on Belinda’s behalf.
At the second assessment, Foley was aided by his younger daughter, a professional guardian for people with disabilities who is experienced with the SIS process.
“She really had a good understanding of what was happening,” Foley said of his younger daughter. “She helped us understand that we’ve got to be realistic about Belinda’s capabilities.”
Hardy also said her experience with the assessment suggests that DD waiver families need help from professional caregivers who are familiar with the SIS.
Hardy’s 34-year-old daughter, Rachel, has frequent, severe seizures that interfere with her thinking and short-term memory. She lives at home with Hardy and her husband.
Rachel has taken the SIS assessment twice, “with wildly different results,” Hardy said.
Rachel was assigned to group A after her first assessment in 2011. Hardy said she, family members and a friend attended the 2011 assessment and answered the questions.
At Rachel’s reassessment earlier this year, Hardy brought three professional caregivers familiar with the SIS to answer the assessor’s questions. Rachel recently was assigned to group D, for people with “severe and profound” disabilities.
Stevenson’s division created an appeals process that allows families to request a reassessment to help assure that the results are valid, Stevenson said. The client’s annual service plan will remain unchanged until the reassessment is complete, she said.
Stevenson said people responding to the SIS must be intimately familiar with the client. But the responders don’t need to be professionals for results to be accurate, she said.
“It needs to be people who know the person really well and have known the person really well for quite some time,” she said.