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Committee hears bill to add nursing hours to CDCS waiver for Minnesotans with developmental disability and type 1 diabetes
Summary
Senate File 2356 would add nine hours of home nursing to the CDCS waiver for people who have both a developmental disability and type 1 diabetes, proponents told the committee, which laid the bill over for possible inclusion in the human services omnibus bill.
Lawmakers heard testimony on a narrowly focused bill to add home nursing hours for people with developmental disabilities who also have type 1 diabetes.
Senate File 2356, carried by Senator Croon, would amend the Consumer Directed Community Supports (CDCS) waiver to provide an additional nine hours of nursing support (added to the existing three hours) for families whose children or dependents are both developmentally disabled and medically dependent on insulin. The bill’s sponsors said the change would address a gap in current waiver assessments that leave families responsible for 24/7 care needs tied to diabetes management.
Sean O’Keefe and Christie O’Keefe testified about their daughter Kenzie, who was born with a chromosomal disorder and developed type 1 diabetes at age 7. "Kenzie now has a deadly disease that requires 24 hour care that she will never be able to manage on her own," Sean O’Keefe said. He and his wife told the committee their family was left with only two choices: institutional care — which they said would cost ‘‘$400,000 to $500,000 per year’’ — or legislation to allow additional nursing hours in the home.
They urged lawmakers to keep the bill narrow to type 1 diabetes to avoid adding other conditions that could complicate or derail the proposal. Another parent, Janelle Traboyovich, described similar challenges finding before‑and‑after‑school care and summer coverage for her daughter, a 15‑year‑old with developmental delays and type 1 diabetes. Both families said the proposed 9‑hour increase, at the current home nursing rate, would be shared responsibility (not full 24‑hour coverage) but would prevent involuntary institutional placement for lack of in‑home nursing.
Senator Croon said the bill is ‘‘pretty simple’’ and would allow families to keep children at home where they are thriving. The committee laid the bill over for possible inclusion in the human services omnibus bill.
Why it matters: families argued that existing CDCS assessment tools do not account for the combination of developmental disability and medically complex diabetes care, effectively giving those households zero minutes of funded nursing. Supporters said the narrowly tailored change would help a small number of families avoid institutional placement and reduce pressure on caregivers who otherwise must stop working.
The bill will be considered for inclusion in the omnibus human services package.
