Feinstein Institutes’ Dr. Sophia Jan, left, and Caren Steinway are...

Feinstein Institutes’ Dr. Sophia Jan, left, and Caren Steinway are co-principal investigators on the newly funded study. Credit: Feinstein Institutes for Medical Research

Researchers at two units of Northwell Health have been awarded a $5.6 million grant to study how new online tools could ease the burden of families that provide care for those with intellectual or developmental disabilities.

Dr. Sophia Jan, chief of general pediatrics at Northwell's Cohen Children's Medical Center and a researcher at the Feinstein Institutes for Medical Research, said the clinical trial is designed to help parents and other caregivers focus on long-term planning.

The value of such planning was made clear in the first waves of the COVID-19 pandemic when ill parents were unable to care for disabled family members.

"When they got COVID and suddenly they were very sick, many families were unable to hold it together," Jan said. "The idea behind this clinical trial is to help parents think about long-term planning."

Lynne Koufakis has two autistic sons in their 20s and serves a chairwoman of the board of Life's WORC, a Garden City nonprofit that provides services to more than 2,000 people with developmental disabilities and autism.

She said that many families with disabled children lack even basic knowledge about how to navigate government services such as Medicaid and food stamps.

"Most people have no clue what to do," she said, but the online tool potentially could help fill the information gap. "Any knowledge is powerful."

One hurdle for caregivers comes when children with developmental disabilities turn 21. Up to that point, they are covered by federal mandates guaranteeing an education, but afterward, the young adults face an uneven range of services provided by the state, Jan said.

"After age 21, a lot of services drop off with kids with disabilities," she said. "After 21, there a big cliff."

Funding for the five-year study is coming from the Patient-Centered Outcomes Research Institute in Washington, a nonprofit research organization that seeks to  help patients and others with practical information about health care choices.

Leading the research team along with Jan are co-principal investigators Caren Steinway, director of clinical research in the division of general pediatrics at Cohen Children's Medical Center, and Dr. Charmaine Wright, director of the Center for Special Health Care Needs at ChristianaCare, Delaware.

The researchers plan to enroll 1,050 family caregivers of people with intellectual or developmental disabilities and divide them between two groups.

One group will get a new online tool that provides guidance about  on planning for medical management, housing, and finances as well as routine contact with their state or county disability services coordinators. The other group will be asked to review  generalized educational content on disabilities and promoting health that are unrelated to planning ,, but also receive routine contact with state and county care coordinators.

A contract will be issued to the researchers once staff at the Patient-Centered Outcomes Research Institute completes its final review of the program.

Jan said long-term planning can ease the burden on caregivers while improving the quality of life of the disabled person. 

"Most families aren't aware of some of the things you need to think about," she said, such as Medicaid waivers, residential planning and special needs trusts.  The trusts are financial instruments that lets people with disabilities get funding for supplemental items like an iPad for communications without affecting their Medicaid eligibility. 

Intellectual or developmental disabilities covered by this study can come from a range of causes: autism, cerebral palsy, severe learning disabilities, Down syndrome, traumatic brain injuries, brain-involved cancers and fragile X syndrome (a genetic condition that results in intellectual deficits).

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