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Editor’s note: This is part 2 of 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 do you, Jennifer Mahan and Kerri Erb, do?

Here are the main areas:

Coordinating public policy

• Communicate with the public, especially those who are concerned about people with ASD. The goal is to help make advocacy and public policy more understandable and encourage people to get involved. We do this through writing blogs, alerts, updates, and publications; making presentations and talking with the media; and talking one-on-one with people who have questions.
• Oversee grassroots efforts to involve families and individuals in working with elected officials and support them as they voice their concerns.
• Advocate directly with elected and appointed officials at the state level to effect policy change that makes a difference in people’s lives. Support and direct ASNC’s lobbyists in their efforts to meet our policy targets.
• Work with staff in state government and Local Management Entities/Managed Care Organizations (LME/MCOs) on issues that affect the autism community and greater intellectual/developmental disability (I/DD) community in terms of service policy and provision, implementation based on feedback from families and staff, and distilling research on what is working and what is not in the field.
• Work with other organizations, building consensus, and making our voices stronger by having many organizations in agreement and advocating for the same things.
• Do research on what good policy looks like, how other states are doing things, what the regulations are, what specifically needs to be changed. Listen to staff, families, individuals and professionals about what they want to see happen and figure out how to get there.
• Monitor activities of the state legislature and administration related to ASD and other developmental disabilities. Includes budget and tax policy, health care, disability services, employment, transportation, education, housing, civic life, etc.
• Work to educate our staff and community groups on the latest and most evidence-based or promising practices for working with individuals with ASD. Emphasize the importance of using what works for each individual with that in mind.

Operating one-on-one advocacy programs, direct services, and training:

• Research and understand how our current systems that support people with autism operate to better assist families and individuals in getting help.
• Help people understand how the services system, health insurance, and other programs can help them access assistance.​
• Provide oversight, direction and support to staff who work in direct services, training and education, clinical services, support groups, chapters, and as resource specialists.
• Help staff with problems. Work directly with families and individuals who have very complex needs and staff who require some support in assisting them.
• Compile reports to funders on the work of the organization, its staff, and its volunteers.
• Manage data collection system and resource database.

In any given week, Kerri and Jennifer might do things such as (a sample from the past month):

• Attend a legislative meeting on Medicaid reform. Talk to advocates and public officials at the meeting about what we like or don’t like about policy changes.
• Visit a legislator, at their request, who wants to know more about autism and what they can do to help.
• Talk with a parent who doesn’t understand the new scholarship program or the tax credit.
• Talk with a parent who is upset that there is no support available for their child or one who is surprised to find they have no insurance coverage.
• Help colleagues write a proposal for funding our programs.
• Run a report in our data collection system showing how many people we served and what their needs were to share with policymakers, LME/MCOs, or the public.
• Add new resources to our database of community resources.
• Speak to parents about how to access services or help them navigate various resources.
• Meet with a group of child advocates to talk about how system reforms might affect us and what we would recommend.
• Serve as chairwoman for a coalition of advocacy organizations and help them write recommendations for crisis services and system direction recommendations.
• Attend a conference on innovative technology or evidence-based and promising practices in ASD and discuss with policymakers around the state about changes needed to adopt new technologies and practices to improve lives.
• Read reports about Medicaid, budget issues, or recent policy changes to better understand the impact on services and supports.
• Attend conferences on latest clinical advancements with ASD and translate that for our community.
• Develop new information toolkits and training for families and individuals in collaboration with ASNC staff.
• Make recommendations to a committee on business practices that streamline administrative functions in the LME/MCO system.
• Be a part of an advisory council on implementation of policy and what can be done better in a local region to meet the needs of the greater I/DD community.
• Work with LME staff to provide information about clinical promising or best practices in ASD or brainstorm with LME/MCOs on how to reach the best outcomes for folks with ASD in our system.

What are the top issues that ASNC is focusing on this year?

Our legislative targets are posted each year on our website. See them here.

How can families or professionals help or learn more?

• Join our mailing list.
• Read blogs and check in on Facebook for news.
• Join our advocacy list and let us know how you might want to help.
• Respond to requests from ASNC for calls, letters, and emails to elected officials.
• Write a short note to your elected official introducing yourself and your family member on the spectrum and letting them know that you live in their district. (See tips).
• Get involved with the local chapter: Attend, join an online group or mailing list, and find out what help the chapter might need.
• Talk with neighbors about what you have learned about services and support for your family member: what works, what is missing from our system, what would help.
• Give us your perceptions and ideas. One way to do that is with this survey.

If you have questions about public policy issues, please contact Jennifer Mahan, Director of Advocacy and Public Policy, at 919-865-5068 or jmahan@autismsociety-nc.org.

Tags: Asperger Syndrome, Asperger's Syndrome, autism, autism advocacy, autism awareness, autism legislation, autism north carolina, autism research, autism society north carolina, autism society of NC, Autism Society of North Carolina, Autism spectrum, autism support, Developmental disability, legislation, medicaid, public policy