National Institute of Mental Health (NIMH)
6001 Executive Boulevard, Neuroscience Center (NSC)
Rockville, MD 20852
June 18, 2024
PUBLIC COMMENT ON THE TOPIC OF FAMILY CAREGIVERS
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 for 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 their lifelines and 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 often 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). Deficiencies in family caregiver support translate into increased hardship for individuals with autism, as well as their siblings.
Though recent movements for research and advocacy specific to family caregiver support are encouraging, the vast majority are directed toward seniors. While seniors often require complex levels of support, the duration and intensity of caregiving are far greater for family caregivers of individuals with autism who require 24/7 support lifelong. On average, seniors only require some level of caregiving for less than 5 years (ACL, 2020). Accordingly, NCSA recommends the IACC authorize a report on autism caregiver burden across the lifespan, including specific analysis for the profound autism population. Concerns should include caregiver physical health, mental health, financial stability, educational and vocational opportunities, food and housing security, and overall quality of life. The report should include a strategic plan outlining specific solutions to secure the well-being of autism family caregivers.
Our recommendations underscore the urgency of representation parity on the IACC. IACC non-federal membership should include more parents or legal guardians providing care for individuals with profound autism, including those with severe and challenging behaviors. Without intentional inclusion of these family caregivers, individuals with autism with the lowest adaptive functioning will remain unjustly excluded β further expanding the disparities they and their parent caregivers face in accessing healthcare, meaningful daily activity, housing, Medicaid waiver services, and more.
Respectfully submitted,
Jill Escher, President
Jackie Kancir, Policy Director
Tips for Submitting Your Own Public Comment
Include your name, address, email address, and phone number at the top. These will be redacted (not public) but are needed for the Office of Autism Research Coordination to contact you and to prevent duplications.
Be respectful. Keep the focus on policy not personalities.
Share your authentic lived experiences as a caregiver. What are your unmet needs?
Share your recommendations. What do you need research and/or federal funding to be directed towards to resolve your hardships?
These become public record. Do not share identifying information, medical information, or anything else you would not want available for the world to see.
Keep it brief. The IACC prefers submissions to be 1000 words max. Use a word processor like Google Docs to access word count.
If you would like assistance writing your comment, please email policy@ncsautism.org. Our policy director will gladly help you tell your story.
Have your voice heard!
Deadline June 24, 2024 5pm Eastern Time
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Please review the guidelines here before submitting: https://iacc.hhs.gov/meetings/public-comments/guidelines/
Submissions may be sent via email to IACCPublicInquiries@mail.nih.gov
(Submissions may possibly be submitted online here also, but the link was broken at the time of publishing this post.)
Commentary from NCSA Policy Director
Neutrality entails establishing a table that is open to all individuals, yet this principle does not align with inclusion. Itβs an invite without a roll call β no concern for the absent, just a celebration of the ones capable to attend.
True inclusion mandates a deliberate effort to comprehend the experiences of marginalized groups, dismantle access barriers, and provide innovative accommodations for historically underrepresented groups. Mere assertions of encompassing the "entire population" prove insufficient.
Embracing inclusivity necessitates ensuring that all individuals β regardless of adaptive functioning, cognitive, or communicative capacities β are equipped with the necessary support and resources to participate.
For individuals with autism requiring round-the-clock intensive support, it is imperative to intentionally incorporate their caregivers as trusted proxies into the representation at the table to authentically encompass the entire population of individuals with autism.
I encourage family caregivers to submit public comment to IACC for their July meeting. Deadline is June 24, 2024. Please share your authentic experiences, unmet needs, and recommendations for positive changes.
Pre-Register to Attend the Meeting Virtually
Wednesday, July 10, 2024; 10am-5pm Eastern Time