Lawmakers stand with advocates, call for increased access to continuous care for kids with medically complex needs

BOSTON – On May 14, Senator Cindy Friedman (D-Arlington), Woburn resident Angela Ortiz, Representative Rich Haggerty (D-Woburn), Representative Sean Garballey (D-Arlington), and Kris Newman of the Mass Developmental Disabilities Council testified at the Joint Committee on Health Care Financing public hearing in support of S.686, An Act to protect medically fragile kids.

The bill, sponsored by Friedman, concerns the state’s most medically vulnerable children and adults, eligible for continuous skilled nursing (CSN) services through MassHealth. Currently, these children are not getting the care they need at home. According to data provided by the Home Care Alliance of Massachusetts, 24% of MassHealth-approved home care service hours go uncovered and 47% of these patients regularly receive less than full coverage.

Additionally, it can take up to 19 weeks for providers to find enough nurses to service their patients. As a result, the roughly 900 CSN patients statewide – over 80% of whom are children under the age of 21 – suffer needlessly. This too often leaves families without proper access to high-quality, family-centered services needed to care for children and adults with challenging medical conditions.

“When over half of nurses leave homecare because the reimbursement is so low, children who need this help to survive suffer needlessly. At the same time, the state ends up spending far more dollars in expensive critical hospital or long-term care,” said Senator Friedman, Senate chair of the Joint Committee on Health Care Financing. “The passage of this bill would be a step in the right direction toward helping parents get their child access to high quality, consistent nursing care that they need.”

“This legislation will help increase access to homecare nurses and provide the proper support to ensure the workforce is available to care for kids in their own homes,” said Representative Haggerty. “It will ensure we are focusing on providing the important healthcare these children deserve and their caretakers need.”

“I was proud to stand with Senator Friedman today and I thank her for introducing this important legislation. We have the opportunity this session to help the most vulnerable among us. Continuous nursing care greatly improves the quality of life not only for patients, but family members and dedicated caregivers as well,” said Representative Garballey.

Friedman’s bill would require the Center for Health Information and Analysis (CHIA), in conjunction with MassHealth, to prepare a biennial report related to patients requiring continuous skilled nursing care. These reports would include such information as the number of pediatric and adult patients requiring such care, the number of hours of such care authorized by MassHealth and the number of hours actually delivered, the number of nurses providing such care, their rate of reimbursement and a comparison of that rate with the rates paid to other nurses.

The bill would also require the Executive Office of Health and Human Services, subject to appropriation, to increase the budget for continuous skilled nursing care in a stepwise fashion over 2021, 2022, 2023 and 2024 with the goal of achieving fulfillment of at least 85% of continuous skilled nursing hours authorized by MassHealth by 2024.

Finally, the bill would direct MassHealth to review the wage payment rates established by home health agencies that provide continuous skilled nursing care, conduct an analysis and make recommendations on criteria to be included in any future reporting by these home health agencies.

To continue tracking the bill, visit