Editor’s note: The following blog post is a Q&A with Jennifer Mahan, ASNC Director of Advocacy and Public Policy, and Kerri Erb, Senior Director of Quality and Programs. We have merged their responses to each of the questions.
What does “advocacy” mean to you personally and within the scope of your job?
Most advocacy is about issues of fair treatment and discrimination. People should be able to have the same opportunities as others, the same choices, and our world should not set limits based on their condition or disability. Being an advocate means having a voice in decisions that are made and speaking out for yourself or others. As people, and for the organization, when we look at advocacy and public policy, we consider:
- Is this going to improve people’s lives?
- Will it offer them the opportunity to succeed?
- Does it improve not only the individual’s life, but our communities?
- Does it make sense? Is it informed by what people say they need? What data supports it or can we collect data about it?
- What outcomes will this help us reach as an organization and for people with Autism Spectrum Disorder (ASD) in NC and how can we improve on those?
Advocacy at ASNC is both one-on-one with individual people and systemic to change the way our world operates and make it more inclusive. It takes a number of forms, but all have those goals at the center. When we say “advocacy,” we mean:
- Assisting families that are helping and supporting other families in their communities through our Chapters and Support Groups.
- Our Autism Resource Specialists helping individuals on the spectrum and their families sort out problems and find resources, and providing a supportive ear when times are difficult.
- Our staff coordinating with other providers, local management entities, professionals, families, communities, schools, and other organizations to provide quality services.
- As an organization, voicing the needs of people with autism in the development of public policies and implementation of public programs. We work across systems, at the legislature, in the state administrative offices, and at the regional and local level to meet that part of our mission. This ranges from MCOs that serve multiple counties down to small towns.
Why is it important that the autism community have advocates?
The incidence of autism is on the rise; an estimated 60,000 people with autism live in North Carolina. Because autism is a spectrum disorder, the needs of those 60,000 are going vary across the range of the spectrum as well as across ages. Studies show that because of autism’s significant impact on families’ time, resources, and finances, there are unique needs for an autism advocacy voice at the state and local level. Individuals and families know their own needs and can best articulate what will help them to succeed. With the pressures of raising a child with autism and managing the services and supports needed as they age into adulthood and beyond, self-advocacy can be lost in the focus on day-to-day issues. Our goal is to give a voice to these collective needs. We know our voice is strong, but it is not enough. We need everyone who is affected by autism to lend their voices. Responding to surveys, getting involved with the work of the organization, and, yes, speaking and writing to their elected officials. We need to be sure we are speaking to benefit the next generation. We advocate for early, accurate screening and diagnosis, and using research to guide our system toward what is known to work best.
How many people do you have working as advocates for the autism community? Who else works on policy- and advocacy-related issues and what are their roles?
Many families and individuals are amazing advocates for themselves. Recognizing the need for more advocacy and supportive services, ASNC has worked in conjunction with the Department of Health and Human Services, the state legislature, and community donors to develop support for families in need of advocacy help.
Autism Resource Specialists: ASNC is the only resource in the state that provides individuals with ASD, their families, and professionals with information, resources, support, family-to-family connections, and system navigation that is tailored to their unique situation. We employ 19 Autism Resource Specialists throughout the state who have firsthand knowledge and experience with autism as parents of children on the autism spectrum. Many of our resource specialists work part-time; we are always working to ensure we have enough resources to meet demand. With resource specialists responding to more than 6,000 requests for help last year from 93 identified counties across NC, resources are often stretched thin.
Chapters and Support Groups: ASNC also has two staff members who, with the help of some part-time Regional Coordinators, are dedicated to supporting Chapters and Support Groups covering 60 counties across NC, as well as a specialty support group for families with children in the autism and behavioral specialty units at Murdoch Developmental Center. These chapters are led primarily by volunteers, mostly parents and family members, whose generous spirit and passion for their own children inspire their desire to help other families facing similar challenges. ASNC is working to provide support groups in counties where no such groups exist. As our base of support groups and volunteers expands, so does the need for staff and group facilitators to ensure that groups remain viable for the long term.
Systems and Public Policy: Jennifer Mahan and Kerri Erb are primarily responsible for, as we describe it, advocating for what policies should look like and how they should operate in the real world. There are a lot of opposing forces at work in changing large systems, and change often takes a long time to sort through the many viewpoints. Jennifer and Kerri are supported by our CEO and Communications staff as well as many other people in the organization lending their expertise. Jennifer and Kerri only spend part of their time on policy. Each is responsible for ensuring the delivery of other services for ASNC, including our direct services, training and education, clinical services, Autism Resource Specialists, and Support Groups/Chapters as well as helping manage quality and data collection.
All ASNC staff: Our Regional Directors, Program and Services staff, clinical staff, and really all of our staff do their part to help individuals and families to follow their dreams and advocate for themselves. Many staff members serve on advisory groups for a variety of community settings such as schools, churches, and LME/MCOs.
Read the second part of our Q&A with Jennifer Mahan and Kerri Erb on Thursday.
Tags: ASNC, Asperger Syndrome, Asperger's Syndrome, autism, autism advocacy, autism legislation, autism north carolina, autism society north carolina, autism society of NC, Autism Society of North Carolina, Autism spectrum, Developmental disability Go back