Sandi Gruberg and Michelle Williams, Co-Communication Coordinators, Washington Statewide Parent Coalitions write to families on what to expect this legislative session, the concerns being brought, and ways you can become involved for your family to have the say in the decisions and issues that directly affect you.
Our 2024 Legislative Session begins this January. This year’s session is a short session, meaning that legislators will be looking mainly at policy changes instead of requests that will have a high impact on state budgeting or spending. A low-cost policy ask might be changing the training requirements for family care providers. A high-budget ask might be increasing respite hours on DDA waivers, creating additional accessible housing, or developing a new DDA waiver service.
Through communication with families like yours across the state this last year, Statewide Parent and Family Coalitions have identified several care and access issues that affect the developmental disability community. We’ve been working hard to bring these issues to the attention of legislators. Here are a few of our community’s concerns that we have already presented to decision-makers:
- Shortage of care providers. Families cannot access trained providers to care for their loved ones or take them into the community.
- Lack of paid safety support. Many of our loved ones are unable to be left alone at home or in the community, yet Medicaid Personal Care/Community First Choice will only pay for direct personal care tasks and not the time a provider or parent spends supporting individuals for safety reasons. Parents and family caregivers often have to leave the paid workforce to provide this unpaid support.
- Lack of regular, meaningful community activities and day programs. Once our loved ones leave school, they are often stuck at home without anything to do. Adult individuals with IDD and their families need dependable day programming that will provide socialization, recreation, learning, and skill-building.
- Unpaid parent caregivers of minors. Under current DDA guidelines, parents can only be paid for providing personal care only after their loved ones turn 18 years old. Parents of Medicaid-eligible minor children with developmental disabilities often have to leave the workforce to provide unpaid personal care.
These are just a handful of issues that parents and family members care about in this legislative session. We know there are other needs that haven’t been heard or presented. Below are some opportunities for you to get involved and make sure your loved one’s voice reaches the elected officials who are making decisions that affect your family.
Register for the Arc of WA’s Advocacy Days https://arcwa.org/advocacy/2024-advocacy-days/
Advocacy Days are held virtually (via Zoom) during each legislative session to involve individuals with intellectual/developmental disabilities (IDD), their families, and their service providers in the legislative process.
Legislative Notebook https://arcwa.org/advocacy/notebook/
Each year before legislative session, The Arc of Washington State, the Developmental Disability Council, and the Community Advocacy Coalition collect information from disability advocates, providers, families, and community members, and compile it into a Legislative Notebook for People with Intellectual and Developmental Disabilities (IDD). The Notebook is available on the Arc of Wa website and includes
- One-page information sheets on the issues of importance
- Data charts on DDA services and supports and how they are used.
- Budget charts
- Budget requests from Developmental Disabilities Administration (DDA)
- List of all Legislators and their contact info
- Priorities Lists from various Community Organizations (including Parent and Family Coalitions!)
Action Alerts https://arcwa.org/action-center/
Sign up with the Arc of WA to receive Action Alert emails or text messages when legislators need to hear your voice on specific budget or policy issues. Make a difference!
Washington State Legislature www.leg.wa.gov
Find your legislators, contact them via email, connect with them during session, find information on bills that have been filed, and sign up to testify or note your position on a bill.
Statewide Parent Coalitions
Contact Michelle Williams email@example.com or Sandi Gruberg firstname.lastname@example.org to learn about statewide advocacy and connect with your local Parent and Family Coalition.
Visit https://www.dshs.wa.gov/dda/dda-messages and sign up to receive timely messages and updates from DSHS and the Developmental Disabilities Administration.
Remember, you and your loved one do have a say in the decisions and issues that affect your lives. As we’ve learned from disability advocates before us, change is made by those who show up!
This article is an excerpt from the 2024 Informing Families Newsletter
Photo description: A picture of the Washington State Capital during the 2023 Advocacy Days Rally