NJ Boosts Support for Families with Disabilities

New Jersey has taken a significant step in providing support for families caring for children with intellectual and developmental disabilities. Recently, Governor Phil Murphy signed the state budget and a bipartisan bill into law, which will allocate $7.3 million specifically for additional hours of emergency caregiving. This funding aims to alleviate some of the burdens faced by families, especially those seeking respite care.

The newly enacted law, known as S2491/A3412, raises the number of hours that respite care workers can provide from 60 to 90 hours over a three-month period. This 50% increase is a much-needed effort to address the growing shortage of available caregivers within the Children’s System of Care (CSOC). This state program is vital, as it serves thousands of children with disabilities who require special support.

In his statement, Murphy highlighted the challenges faced by caregivers: “As many know, even on the best days, being a parent is a full-time job; however, for those who have to step into the role of caregiver for their children, it is especially demanding, even for the strongest and most resilient among us. By increasing the number of respite care service hours funded through the Department of Children and Families, we are supporting caregivers across the Garden State.”

The CSOC has faced long-standing issues due to limited resources and high demand, particularly regarding emergency housing and treatment for children with disabilities whose behavior can sometimes be challenging. The additional funding is a welcome relief, according to Suzanne Buchanan, the executive director of advocacy group Autism New Jersey. “Raising a child with autism could be considered ‘extreme parenting,’” she said. “The caregiving demands are higher in terms of supervision and safety, advocating for and securing services, and adapting their lives to their child’s needs while trying to meet all family members’ needs.”

Buchanan further emphasized the importance of respite care: “Respite relieves some of that stress—practically and emotionally. While finding compassionate and skilled respite providers remains a challenge, hopefully this new funding increases the availability of respite services, especially for the families who need it the most.”

Currently, an estimated 13,000 children and teens with disabilities are part of the Children’s System of Care in New Jersey. Despite this substantial need, the state only has 353 emergency beds designated for this population, with just 187 of those actually available due to staffing shortages.

The legislation received sponsorship from state Senators Paul Sarlo and Kristin Corrado, along with Assembly members Chris Tully and Lisa Swain. Senator Corrado, a Bergen County Republican, noted the multifaceted benefits of this funding: “Increasing the number of hours and dedicating funds for those that take care of our loved ones not only helps our families with much-needed assistance, but it will also attract highly qualified people to the profession. Additionally, this bill will help relieve the daily stresses and demands of caring for a child with a functional impairment to give everyone involved the peace of mind they deserve.”

However, some families remain skeptical about the effectiveness of the funding in addressing their urgent needs. Lisa Fitton from Freehold waited nearly two years for the state to secure an emergency out-of-home placement in a group home for her son, whose severe autism can lead to violent outbursts. “Every day was like a test of survival,” she recalled, recounting confrontations with Andrew, now 24, that left her with scars from his bites. She needed to escape and find a place to hide whenever he lost his temper.

Fitton expressed concerns that the increased funding might not sufficiently support high-need families. “It’s good that more hours have been approved. But the bigger problem is finding the staff. We had been approved for a number of hours, but the issue was finding staff who felt they could handle him,” she said. “Where do you find them? How do you train them, and how do you keep them? It’s really hard to work with kids who are kicking you and throwing things for $15-$17 an hour. You could work at ShopRite for that kind of money or maybe more.”

As families navigate these challenges, the demand for effective respite care continues to grow. Many parents are seeking respite care not only to find relief from the daily stress of caregiving but also to ensure that their children receive the support they need.