During a recent government meeting, advocates and family members of individuals with disabilities voiced their concerns regarding the challenges faced in accessing essential services, particularly in relation to the Consumer Directed Personal Assistance Program (CDPAP) and family support services.

Christine, a home health aide and former Emmy and Grammy-winning editor, highlighted the difficulties she encountered after transitioning to caregiving for her sick son. She expressed frustration over the limitations of CDPAP, which restricts access to certain services, including legal aid for special needs trusts. Christine emphasized the need for broader eligibility criteria to ensure families can access necessary resources without being hindered by bureaucratic restrictions.

Christopher Price, a long-time advocate for people with disabilities, called for increased visibility and engagement from state officials during Disability Pride Month. He urged representatives to participate in community events across New York, emphasizing the importance of direct communication and support for families navigating the system.

Jacqueline Chibody, a parent and representative from a family support agency, raised concerns about the reimbursement process for services, particularly for individualized programs like sports and arts. She criticized the reliance on income-based eligibility, arguing that support should be based on the specific needs of children with disabilities. Jacqueline also pointed out the lack of available respite programs in downstate regions, which has left many families without options.

Other speakers echoed these sentiments, advocating for improved communication and faster responses from state agencies. They stressed the importance of simplifying application processes and providing clearer information to families about available services. The need for timely access to resources was a recurring theme, with many participants expressing frustration over administrative burdens that delay support.

Overall, the meeting underscored the urgent need for systemic changes to better support families of individuals with disabilities, ensuring they have access to the services and resources necessary for their well-being.