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Parents and providers describe patchwork access to respite care as commission readies study
Summary
At a Bergen commission meeting, members heard firsthand accounts that respite services for families of children with disabilities are often ‘available on paper’ but not in practice; the group asked agencies (DDS, birth‑to‑3, OPM) for materials and assigned follow‑up work.
The Bergen commission discussed a legislatively charged study on access to respite care for families of children with disabilities, with multiple members and participants stressing that service availability varies by age, disability and region.
Tom read the charge, and Liz—who identified her lived experience and role with an early childhood center—described multiple personal and local cases where services were promised and then withdrawn: "I can name 4 people within my 5 mile radius of my home who've contacted me personally and are like, I just need help," she said, adding that families frequently face abrupt program closures or staffing shortages that leave children without planned supports. Liz and other participants emphasized that respite is an umbrella term: different ages and service models (birth‑to‑3, school‑based supports, adult services) create confusion about eligibility and where families should turn.
John and other speakers described system fragmentation: multiple agencies refer families to one another, leaving parents stuck ‘‘between two organizations’’ with no clear point of contact. The group recommended compiling existing agency resources (DDS guidance, OPM working‑group materials, birth‑to‑3 contacts) into a single running list of providers and links. Liz volunteered to lead collection of DDS‑side information; Mary said she would check with birth‑to‑3 and the Office of Early Childhood. The commission proposed a small working group (two or three volunteers) to assemble the consolidated resource and report back at the August meeting.
Next steps assigned during the meeting included gathering DDS and OPM materials, combining those with any existing working‑group lists, and creating a simple resource sheet for families and legislators. No formal vote was taken; members framed the work as fact‑finding and consolidation rather than program redesign.
