Elected officials call for increased access to continuous care for kids with special health care needs

BOSTON- On Oct. 24, Senator Cindy Friedman (D-Arlington) and Representative Jim Dwyer (D-Woburn) joined a panel of advocates, including Woburn resident Angela Ortiz, at the Joint Committee on Public Health public hearing to testify in support of H.1959, An Act for the continuous skilled care of fragile children in the Commonwealth. The bill would establish several protections for children, adults, and their families with complex medical conditions and special in-home health care needs.

The state’s most medically vulnerable children and adults, eligible for continuous skilled nursing services through MassHealth, 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, families are too often left without proper access to high-quality, family-centered services needed to care for children and adults with challenging medical conditions.

“This Patient Bill of Rights is a keystone piece of legislation desperately needed to protect medically fragile children like my daughter Ayla, receive highly-skilled nursing at home with vital, built-in safeguards that can no longer be ignored or neglected,” said Angela Ortiz, founder of the Massachusetts Pediatric Home Nursing Care Campaign.

“There is a crisis in homecare for patients who need skilled, continuous care in their homes,” said Senator Friedman. “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. The passage of this bill would help parents like Angela ensure that their child is guaranteed access to high quality, consistent nursing care that they need and deserve.”

Under the bill, every child or adult in the Commonwealth who is eligible for the continuous skilled nursing program would be guaranteed high-quality and family-centered care that is flexible, considers the clinical, mental, physical, and emotional needs of the patients of the family, and maintains the dignity of the patient.

“The Commonwealth needs to ensure that children and adults receiving continuous skilled nursing care are treated with dignity and proper care,” said Representative Dwyer. “I am proud to stand with Angela Ortiz, founder of the Massachusetts Pediatric Nursing Care Campaign, to make sure we provide our most medically fragile children and adults with the continuous skilled nursing they need.”

The bill would also assure proper access to a timely determination of services, consistent delivery of care services, a choice of providers, and a provider that communicates effectively with families and other providers for continuity of care.

Additionally, it would guarantee a continuous skilled nursing workforce that are paid a wage based on a reimbursement rate that allows the provider to compete for the median of nurses in the Commonwealth and receive regular training and continuing education.

Finally, it would ensure accountability that includes biannual rate reviews by the Office of Medicaid within the Executive Office of Health and Human Services.

About the Massachusetts Pediatric Home Nursing Care Campaign

Launched in April 2016, the Massachusetts Pediatric Home Nursing Care Campaign is fueled by parents across the state who are struggling to find and retain Continued Skilled Nursing to properly care for their loved ones with complex medical needs at home. Its goal is to ensure that all eligible families have access to skilled care, to expand and sustain a high-quality workforce in the community, to improve financing for community-based long-term supports, to ensure that system-wide quality improvement processes in existing and future long-term support delivery systems are implemented, to ensure agency oversight/accountability, and to ensure ongoing training of nurses caring for this most medically fragile population.