NCSA Public Comment to the IACC: Family Caregivers of Individuals with Severe Autism — June 2024
Public Comment | June 18, 2024
National Institute of Mental Health (NIMH)
6001 Executive Boulevard, Neuroscience Center (NCS)
Rockville, MD 20852
June 18, 2024
PUBLIC COMMENT ON THE TOPIC OF FAMILY CAREGIVERS
The National Council on Severe Autism (NCSA) earnestly submits this public comment on the topic of family caregivers. We are interested in providing oral comment at the IACC meeting scheduled July 10, 2024.
For individuals with autism who have profound cognitive impairments, minimal verbal capacity, intense challenging behavior, very low adaptive functioning, co-occurring conditions, and require care for physical safety, their family caregivers are an invaluable resource for understanding the unique challenges of lived experiences in this demographic.
The commitment of family caregivers, often spanning many decades, is a testament to their dedication. They endure emotional, physical, financial, and social hardships, as documented by various studies (Argumedes et al., 2018; Holt 2023; AARP & NAC, 2020a; Marsack & Samuel, 2017). The weight of these challenges can be overwhelming, even for the most dedicated of parents (AARP & NAC, 2020b). The lack of family caregiver support is a disservice to the individuals with autism who rely on them for constant daily care across the lifespan.
Though recent movements for research and advocacy specific to family caregiver support is encouraging, the vast majority is directed toward the aging population. The aging population requires similar complex levels of support, but the duration of caregiving is abundantly greater for family caregivers of individuals with autism who require 24/7 support lifelong. NCSA recommends targeted longitudinal studies on caregiver burden across the lifespan to delineate the impacts on physical health, mental health, financial stability, educational and vocational opportunities, food and housing security, and overall quality of life for family caregivers. NCSA urges IACC to consider the enhanced challenges posed when very substantial support is needed across the entire lifespan. A strategic plan must be developed with solutions to secure the well-being of these family caregivers.
This underscores the urgency of the need for equal representation in IACC. We recommend IACC non-federal membership of parents or legal guardians be designated exclusively to those providing care for individuals with autism with very low adaptive functioning. Without intentional inclusion of these family caregivers, individuals with autism with the lowest adaptive functioning will remain unjustly excluded – allowing the disparities they face in accessing healthcare, meaningful daily activity, housing, Medicaid waiver services, and more to continue.
Respectfully submitted,
Jill Escher
Jackie Kancir
President
Policy Director
