The Autism Society of Greater Akron (ASGA) advocates for people living with autism on the local, state and federal levels. While April is one time to focus on advocacy, it is something ASGA does year-round to achieve its mission of improving the lives of all affected by autism.
In 2018, ASGA held its fourth annual Autism Summit. At the Summit, ASGA released advocacy goals for state and national initiatives to improve the quality of life for individuals and families living with autism in our community. ASGA also released the results of their second “Quality of Life” survey, completed in conjunction with Kent State University, that received input from over 150 individuals about their quality of life in the Greater Akron community.
ASGA also proudly honored “Autism Ambassador” founders Marilyn and Joe Henn, who co-founded the Autism Society of Greater Akron affiliate in 1987, along with Summit County Prosecutor Sherri Bevan Walsh, who started the Take Me Home program in Summit County, and Summit County Executive Ilene Shapiro for leading efforts to declare a commitment to being autism-friendly in Summit County, the first county in the State of Ohio to do so.
Pictured left to right: Marilyn Henn, Joseph Henn, Summit County Executive Ilene Shapiro, Summit County Prosecutor Sherri Bevan Walsh
Autism Friendly Communities
In 2017, ASGA launched the Autism Friendly Communities program in conjunction with Summit County declaring itself “Autism Friendly.” Since that time, ASGA has trained over 2000 professionals in understanding and interacting with individuals with autism from the medical, law enforcement, direct service, nonprofit, library, parks, and other sectors.
ASGA has ongoing conversations and participation in affecting change at the school, Board of DD, and provider levels on behalf of individuals and families.
The Request: Continue to share your stories with us and we’ll continue to ensure your stories are told!
ASGA works with the Autism Society of Ohio – the coalition of the Ohio affiliates of the Autism Society of America – on state-wide advocacy. In addition, ASGA either meets or mails out a position paper annually to state legislators that relay policy positions that align with improving the quality of life for individuals with autism and other developmental disabilities.
Issues identified for 2019 include the following:
Developmental disabilities are chronic, lifelong conditions — like autism — that impair physical or cognitive functioning and require life-long appropriate care.
Health Insurance Coverage: Increase the age of coverage past the age of 14, a critical time when individuals are transitioning out of the school and into the community environment.
The Request: ASGA urges Ohio lawmakers to increase the age of coverage of essential services past the age of 14.
People with autism and other developmental disabilities depend on Medicaid for a full range of health and other supports, including Waivers that pay for transportation, housing, respite, job coaches and medical expenses.
The Request: ASGA urges Ohio lawmakers to continue Medicaid Expansion.
Ohio is one of only eight states without an Early and Periodic Screening, Diagnostic and Treatment (EPSDT) benefit for intensive treatments, such as Applied Behavioral Analysis, an evidence-based treatment many children with autism utilize to learn academic, functional, and independence skills.
- For children ages 0 to 21, our state needs an EPSDT Medicaid Health Plan ABA benefit. We can accomplish this without legislation through the CMS/Federal Medicaid July 7, 2014 information bulletin stating ABA treatment is now required and can be reimbursed through Preventative Services.
- For adults ages 21 and over, our state needs a benefit to fund Periodic & Focused ABA Interventions through the Medicaid system.
- Focused ABA treatments target a certain number of behavioral targets and a limited number of key skills needed to support the individual at that moment in time.
- Leveraging ABA to teach independence and behavior regulation skills beyond school-age supports improved abilities to work and be in the community.
The Request: Please ask your legislator to reach out to the Ohio Department of Medicaid, Director Maureen Corcoran, to urge our state to adopt this crucial standard. You can also share what you have done and learn more at The Ohio Autism Insurance Coalition http://www.asdohio.com.
Grandfathered/Grandmothered Insurance Plans
Grandfathered (Federal authority) and grandmothered (State authority) plans that continue to exclude the Essential Health Benefits required under the Affordable Care Act are discriminatory toward people with autism and other developmental disabilities. The Rehabilitative and Habilitative Services section requires Habilitative services to include “the following services for children diagnosed with Autism Spectrum Disorder”
- Speech and language therapy
- Occupational therapy
- Clinical therapeutic intervention
- Mental/behavioral health outpatient services
The Request: Ohio, close these loopholes like other states have done. ABA therapy is a long-standing evidence-based practice that results in measurably improved outcomes for individuals with autism, including greater long-term independence leading to employment opportunities and less dependency on others.
Ohio ranks 45th in the nation for public transportation funding, but we are the seventh-largest populated state in the nation.
- Ohio has relied almost entirely on federal funds to pay for the public transit needs of its citizens.
- People with disabilities depend on public and other types of transportation and need greater funding to create more transportation options.
The Request: Any consideration of increasing revenue for transportation purposes should not be confined solely to infrastructure spending. Ohio needs a real plan for addressing the transportation needs of its citizens with disabilities.
Direct Care Staff
There is a national and state crisis in Direct Care Staff (DCS) to support and care for individuals with disabilities.
- DCS are not paid a living wage (considered to be $15/hr), leading to recruitment challenges and high staff turnover; they also work with one of society’s most vulnerable populations.
- DSP staff who work with individuals with autism, in particular, need training in understanding autism, including how to create routines and structured environments, along with behavioral modification techniques, and supporting independent living skills.
- Currently, there are high turnover rates, a lack of training that is specific to the person’s needs and disability, and sometimes even neglect and abuse.
The Request: Governor DeWine included in his budget request an increase in pay for DCS. We support this increase but urge our state to continue to seek ways to pay DCS a living wage to make this a career option for people who wish to work in the field. With the reduced turnover and increased training and experience caring for people with disabilities, the quality of care can improve and hopefully, so will the number of abuse and neglect filings. We urge our state to create a comprehensive understanding of the individual needs of individuals with disabilities and ensure providers have the tools and training to meet those needs.
President Trump’s Proposed Budget: Impact on Individuals with Autism
Earlier this month, President Trump released the FY 2020 budget, which proposes cuts to all departments outside of Defense and Homeland Security. Here is what that means for individuals with autism and the broader disability community:
Elimination of the Autism CARES Act Health Resources Services Administration Budget
Since its enactment in 2006, the Autism Collaboration, Accountability, Research, Education and Support (CARES) Act has significantly increased research efforts, surveillance and awareness activities, public education, and training of professionals to screen and/or diagnose for autism and other developmental disabilities. While great progress has been made since 2006, there is still a significant need for additional services, supports, and education to improve the quality of lives of individuals with autism and their families.
Massive cuts and structural changes to the Medicaid program
The proposed budget includes $777 billion in cuts to Medicaid over the next ten years as well as structural changes to per capita caps and work requirements. Medicaid is vital for many individuals with autism and their families as it provides access and coverage for supports and services at home and in the community. The budget cuts will also make accessing affordable housing and food assistance programs more challenging for individuals.
Significant cuts to programs that provide support and resources to individuals with disabilities, including:
- Complete elimination of Supported Employment state grants (100%)
- Lifespan Respite Care Act - $1 million (25%)
- Developmental Disabilities Councils - $20 million (26%)
- IDEA Technical Assistance - $18 million (28%)
- CDC Birth Defect and DD Center - $44 million (28%)
- See The Arc’s Funding Table for spending levels for selected disability-related discretionary programs in the President’s FY 2020 Budget Request.
This budget proposal from the President is just the first step of many in the federal budget and appropriations process. From here, Congress will be tasked with the development of their budget proposal.
Now is a great time to make your voice heard. Together we can make a great impact on the lives of individuals with autism in our local communities!
Here is how you can get involved to help advocate for the highest possible funding for programs that support people with autism: