We Help People And Families Affected By Autism
Advocating for the Delaware Autism Community
Lend Your Voice to Help Us Change the World
Autism Delaware actively advocates for the autism and disability communities to the Delaware General Assembly and state agencies. Read more about the work we’re doing and how you can get involved!
Become an Autism Advocate
Have you ever wondered exactly what it means to be an advocate? Have you ever thought that you would like to help Delawareans affected by ASD?
Anyone can do it! Every story needs to be told and every voice needs to be heard!
There are lots of ways to advocate…
This is Hope Pearce. She and her father, Rodger Pearce, worked hard to advocate for HB104, the McNesby Act, which passed the Delaware legislature in June 2018. This bill helps provide essential funding for adult services.
Rodger and Hope worked with the Ability Network of Delaware and Autism Delaware to tell their story to legislators, write letters, write op-eds, and they even recorded radio commercials in support of the legislation!
It’s all about sharing your story, in your voice!
Autism Advocate’s Action Kit
The Advocate’s Autism Action Kit is Autism Delaware’s guide to advocating for yourself and your loved one to policy-makers. While Autism Delaware staff represent the agency and community in Legislative Hall and state agencies, our voice is only as loud as the people for whom we are speaking!
Click below to download our whole kit or click the links for more information.
Smart Cookie Day
This is the day when Autism Delaware staff and teams of volunteers converge on Legislative Hall in Dover to meet with legislators and give them freshly baked chocolate chip cookies as a way to thank them for their support of all Delawareans who are affected by autism spectrum disorder. We all wear blue, autism’s symbolic color, and have lots of fun!
Our teams meet with legislators and speak with them about their lives and what challenges they have faced having a loved one who is living with ASD. The teams also speak about the importance of offering the same level of high quality and proven supports and services to students no matter where in the state they attend school.
Your story matters, and your voice can be heard!It is so powerful for family members to attend meetings with the legislators to tell their personal stories.
Issues & Positions
The Able Act
The Federal Achieving a Better Life Experience (ABLE) Act was signed into law by President Obama on December 19, 2014. This bill allows people with disabilities and their families to create tax-free savings accounts to use for their futures without risking the person’s eligibility for benefits. ABLE plans function much in the way that 529 college savings plans do while accounting for the unique future needs of people with disabilities. Qualified expenses under ABLE plans include:
- Medical/dental care
- Assistive Technology
- Employment training
- Community supports
The Delaware Treasurer’s Office launched Delaware’s ABLE accounts in mid 2018. Information on the plans is available here.
Home and Community Based Services
There has been a great deal of discussion in recent years over the concept of “home and community based services.” Well-intentioned and knowledgeable advocates have disagreed on what it really means to provide such a service and how individuals with disabilities will be affected by a variety of proposed legal definitions.
Autism Delaware conducted a study on best practices in adult services in 2007 and, as a result of that study’s findings, opened Productive Opportunities for Work & Recreation (POW&R) as an entirely community-based vocational service. This program’s impact on individuals with autism has been remarkable and recognized on both a state and national level.
As Autism Delaware continues to expand, we will go on providing innovative, community-based and person-centered services to fulfill the needs of those affected by autism in Delaware. Each individual with autism is unique, and therefore we need a flexible range of services – in behavioral interventions, vocational programs, residential service and more – to provide appropriate supports for everyone. Individuals should have the opportunity to choose for themselves what works best for them.
Most importantly, every service and support should be outcomes-based – placing emphasis on satisfaction and quality of life regardless of where the service is offered. We believe that a flexible range of options, combined with outcome-based regulations, will provide the best opportunity for all Delawareans living with disabilities to lead happy, fulfilling, productive lives.
Autism Delaware will continue to work with our partners in the community to provide person-centered, community-based options for services. We hold to our mission to help people and families affected by autism, and our vision of a world in which all people with autism have opportunities to learn, grow and live full lives as included and valued members of their communities.
HB 104: The Michael McNesby Full Funding for Adults with I/DD Act – PASSSED (with partial funding) (June 30, 2018)
This bill will help community service providers hire and retain the staff needed for essential day and residential services for people with developmental disabilities. The McNesby Act will ensure that funding for services is brought up to level recommended by the Department of Health and Social Services over the next 3 years.
Medicaid is a government health care program for people with low incomes and/or disabilities. Many Delawareans affected by ASDs rely on Medicaid-funded services through school, adult day services, and of course medical and therapeutic professionals. These programs are critical to keeping our loved ones safe, productive, and progressing.
But misconceptions about whom the program benefits have made it a politically popular target for cuts by states across the country and at the federal level. Even proposals to change the funding structure can result in cuts to the programs impacting people with disabilities as not all services offered are required by law. Protecting and understanding these services is critical. We’ll keep the section below updated with news and information on any potential threats at the state or national level.
Autism Delaware opposes any spending plan that would harm services for people with disabilities and their families. This includes cuts to and block granting Medicaid, arbitrary spending caps, and balanced budget requirements that would prevent the federal government from responding to increases in service needs. Cutting services from some of our most vulnerable citizens is not fiscally or morally responsible.
Autism Delaware is working to pass legislation that will enable increased training and technical assistance for all Delaware teachers educating students with autism. In addition our staff is actively taking part in the strategic plan for special education stakeholders work group, which brings together special education professionals with advocates from Delaware’s birth mandates communities to work together toward enhanced support for all Delaware children with special education needs.
HB 292 will update the structure of the Delaware Autism Program (DAP) to become a statewide program for all students, and will put the necessary resources in place to create the kind of training and follow-up in-classroom technical assistance that we know has been needed for so long. This will allow more children to receive the supports and services they need in their home school districts.
Autism Delaware’s staff and volunteers officially serve on and/or regularly attend many statewide committees, commissions and groups to better advocate for the needs of individuals and families affected by autism. Some of these include:
Because Autism Delaware’s advocacy is mostly focused on state-level issues, most of the content in these pages apply to how to effect change in Delaware. Federal information can be found in the “Government Links” and “Issues and Positions” sections.
Policymaking is an ongoing process. The Delaware legislature meets January through June, but the legislators meet with constituents at any time. Regulations by executive agencies are issued for public comment year-round. And the budget process for the next fiscal year starts nearly as soon as the ink of governor’s signature on the current year’s budget has dried. Understanding how these processes work is key to accomplishing progress for people and families affected by autism!
Note: The man featured in this video is Autism Delaware’s former, long-time Policy Director, Alex Eldreth. Sadly Alex passed away in November 2017, but we think this video is a great tribute to him. And the 2018 passage of HB292 the Alex Eldreth Autism Education Law would have made him ecstatic!
The United Way of Delaware Designation Number 9234. Southeastern PA Designation Number 12598. Autism Delaware is a Non-Profit 501(c) (3) Organization. Autism Delaware™, POW&R™, Productive Opportunities for Work & Recreation™, and the puzzle-piece logo are trademarks or service marks of Autism Delaware Inc.