Policy Pulse Newsletter - June 2023
Not signed up to receive the Policy Pulse? Become an advocate today.
June 27, 2023 | Autism Policy for All
This edition of the Policy Pulse newsletter covers themes of disparities, caregiving and home and community-based services as well as our upcoming July 4th virtual celebration.
Advocate Spotlight
Meet Kimacka from Indiana
We recently celebrated Juneteenth which commemorates June 19, 1865 - the day the last remaining enslaved people in the US received word that the Civil War had ended and they had been liberated. This federal holiday has become a time for sharing stories of Black resilience, resistance, liberation, and joy.
In honor of Juneteenth, we shine this month's spotlight on Kimacka Randle - an advocate who gives voice to the autism community through empowering her three children with autism and unites communities through education and compassion. She reminds us that "communities are ambassadors of hope"
Aging, Autism & Caregiving
New state resources benefit aging caregivers
Family caregivers are one of the most important sources of support for people with autism. They help with an array of activities including eating, bathing, dressing, managing finances, performing medical/nursing tasks, managing multiple and complex medications, coordinating care among multiple providers and settings, and paying for services to help their loved ones such as home modifications, transportation, or a home care aide. The assistance family caregivers provide saves taxpayer dollars, helps delay or prevent loved ones from needing more costly care, and prevents unnecessary hospital readmissions.
The need to support family caregivers is greater than ever as predictions show that the increasingly older population has led to the ratio of caregivers to people needing care to shrink over the next few decades. There are nearly one million households in the United States that include adults with I/DD and an aging caregiver, who may soon need their own long-term care.
New resources will help adults with I/DD and their aging caregivers prepare and plan for the future. The Centers for Medicare and Medicaid Services (CMS) has released resources on supporting adults with intellectual and developmental disabilities (I/DD) and their aging caregivers. The resources are state specific so people can find help at a local level.
- State Spotlights: Supporting Adults with I/DD and Their Aging Caregivers is intended to support state Medicaid and partner agencies in their efforts to develop, implement, and expand innovative strategies for supporting adults with I/DD living with and cared for by aging caregivers.
- How State Agencies Can Anticipate and Meet the Needs of Adults with I/DD and Their Aging Caregivers describes state policies and practices for understanding current and future service system needs for serving adults with I/DD and aging caregivers.
- State Policies and Practices to Support Person-Centered Planning Across the Lifespan for Individuals with I/DD and Their Aging Caregivers describes policies and practices for states to implement person-centered planning processes consistent with CMS requirements that support individuals with I/DD and their families to plan across their lifespans.
- State Policies and Practices to Support Aging Caregivers of Adults with I/DD provides strategies for states to consider for assessing and addressing the needs of caregivers of adults with I/DD.
How can you support caregivers today?
Contact Congress about the Autism Family Caregivers Act!
Autism Family Caregivers Act
The Autism Family Caregivers Act (H.R.2965/S.1333) would create a nationwide pilot program to provide evidence-based skills training for caregivers of children with autism and other developmental disabilities and delays, teaching them how to use every day routines and home activities to improve the mental and physical well-being of their children.
Autism Across the Country
Select updates of our state government affairs work
We work across the United States advocating on behalf of individuals with autism and their families. These are just some highlights from our recent work on home and community-based services (HCBS).
The Value of HCBS: People with autism and the families that support them rely on a range of options throughout their life spans to live, remain safe and participate in their communities. The majority of these lifelong supports are funded by Medicaid HCBS. Different HCBS may be available to people based on their age, where they live and level of functional impairment.
The Problem: Lengthy waiting lists exist around the country and the availability, scope and duration of supports varies widely by state. The patchwork system struggles to meet the demands of both families and adults with autism living in the community. Without HCBS, families and individuals must provide these supports on their own.
Our Policy Priority: Lifelong services and supports must be sufficiently funded to ensure that every person with autism and their families receive the individualized services they need, when they need it. These supports must fundamentally respect the dignity and individual needs of each person receiving services. Access to HCBS must also be increased, and HCBS providers must be trained and paid adequately to ensure they have the capacity to provide high-quality services. Our work in Iowa and Connecticut are just two examples of recent strides toward achieving this goal.
Iowa |
Connecticut |
|
Positive Progress: Autism Speaks and Lisa Cook from Iowa's Department of Health and Human Services recently held a webinar to explain and answer questions about the state’s plans to improve the state waiver program for individuals with disabilities. Their presentation included ways to engage in their ongoing feedback sessions from constituents. Watch the recording or review the presentation slides to learn more. |
Advocacy Win: HB5001 became law on June 15. This new legislation will expand the state's autism waiver and reassess eligibility for I/DD waiver services. Under this new law, the state’s Medicaid waiver for persons with autism will expand to serve at least 600 people by January 1st, 2024 (up from 219 people served). This is positive movement in addressing the needs of over 2,000 people on the state waiting list to receive services. |
July 4th Potomac 5K
Join our advocacy team!
“July 4 represents a time to celebrate our nation’s independence and for me to be a part of the virtual 5K, it helps spread advocacy work in the community and for the government on the state and local level.” - Mike D., Florida Self-Advocate
Autism Speaks is kicking off the Fourth of July with our annual Potomac 5K virtually and in-person in Potomac, Maryland. Because of this event’s location in the Washington, DC area, we recognize it as a celebration of our 20+ years of advocacy in the nation’s capital.
We're excited to come together virtually and in-person for as a national advocacy community to celebrate July 4th and this 5K run/1 mile walk event.
Everyone who registers with our "Autism Speaks Advocates" team is entered to win a $50 gift card to the Autism Speaks e-store. Two participants will be selected as winners and emailed directly about their prize after the event.
Not signed up to receive the Policy Pulse? Become an advocate today.