AUGUSTA, Maine — Neal Meltzer held up a picture of 91-year-old Peter, who has lived at the WABAN Project in Sanford for the past 20 years.
Peter, who can’t speak or feed himself nor perform a range of other personal tasks, enjoys that care through state Medicaid funding. That care is at risk, according to Meltzer, because of a new proposal by the Department of Health and Human Services to use a standardized test to determine how many hours a week of paid support patients like Peter receive.
“Peter’s hours would be reduced by 65 percent,” said Meltzer. “Some of Maine’s most vulnerable individuals would be adversely impacted by this proposed rule.”
Meltzer was one of dozens of people drawn to Augusta on Tuesday to testify against a proposal by Gov. Paul LePage’s administration to use a test called the Supports Intensity Scale to determine the level of services people with disabilities would receive. The SIS test is being used by service providers and agencies across the United States and around the world and according to the American Association on Intellectual and Developmental Disabilities, is being used by 22 state governments.
The test is designed to determine a person’s capabilities and by extension, the level of support they need. Families, caregivers and a handful of adults with intellectual disabilities said Tuesday that the test is flawed, especially compared with the current method, which involves assessment done by a group of family and medical professionals.
The SIS, sold by the American Association on Intellectual and Developmental Disabilities, has been used internationally and in states such as California, Virginia, Kentucky and Louisiana, where critics said it resulted in sweeping changes to eligibility and service delivery criteria.
Many who testified Tuesday expressed concern that its use in Maine would result in drastic service cuts for themselves or disabled family members.
“The SIS is a high-stakes test,” said David Cowing of Woolwich, who has an adult family member with intellectual disabilities. “One test alone should not be the sole determinant of what services a person with disabilities receives.”
The proposed change by the Department of Health and Human Services is aimed at eliminating a wait list for the services in question and targeting resources for the people who need them most. As of October 2015, there were 1,218 Mainers waiting for these services.
DHHS spokeswoman Samantha Edwards said the initiative is not designed to save money.
“The rule change is about improving the system so that individuals are receiving the care that is most appropriate for them,” wrote Edwards in response to questions posed by the BDN. “It is important to stress that this is not about taking away services. The SIS is a tool used to assess an individual, but there is the opportunity to appeal if the individual or their guardian feels more care is needed.”
During Tuesday’s standing-room-only hearing, Jackie Ziniel of Portland described her experience living in a group home. Staff provided a range of support, including driving residents to medical appointments, social functions, the library and the gym.
“Without the support from our staff, we would not be able to be so active,” said Ziniel. “I would spend all day in my room like a lump on a log. … Please don’t take this away from me.”
Ziniel’s capabilities are far more advanced than many of the Mainers who were described at the hearing. Hans Olsen of Kennebunk has two grown sons with the same metabolic disorder that severely limits their functioning. Both would see a reduction in their support under the proposed rule, he said.
“Their needs are intense. This is not a 9-to-5 disability,” said Olsen. “It’s a 24/7 disability and in no stretch of the imagination could either of them live without 24/7 care. … Moving ahead with this rule is like flying with one eye. There’s no depth perception and that doesn’t make for good landings.”
Peter Rand of Community Partners in Biddeford said the impact of the change would severely cut revenue for organizations like his.
“While it may be desirable to offset Medicaid funding with other types of fundraising, the reality is that it is being tried,” said Rand. “Maine is a rural state and donor dollars are very hard to come by.”
The rule has been under consideration for more than a year. Because it affects funding, it requires legislative approval before implementation.
Anna MacDougal of Wiscasset, who is becoming a regular face at the State House as she advocates for herself and others with intellectual disabilities or autism, urged the department to abandon the rule.
“We are not a score or a number,” said MacDougal. “We have a voice. We have feelings. We are people with disabilities. … Please don’t make these changes that would cut our programming that we love. It’s a big part of our lives.”