Parent Advocacy for Disability Rights: What We Can Do Now to Protect Our Children’s Rights

As parents, we’re no strangers to advocating for our children — to protect their right to access and to secure the resources they need. Now, families are faced with the news that some of our children’s rights might be at risk. As if there wasn’t already enough to juggle, this news brings worry, confusion, and a sense of powerlessness — leaving many of us unsure of what to believe or how to respond.

Here are some of the issues we’re facing: advocates have raised concerns about Medicaid being drastically cut, taking billions of dollars out of the system that funds Medi-Cal, IHSS, and Regional Center. Disability rights advocates are also worried about the possible closure and defunding of the Department of Education, wondering what might happen to the Office of Civil Rights that defends our children’s right to an education, or programs like Head Start that provide inclusive early education. There is also an impending legal challenge to the 504 Section of the Rehabilitation Act. The news changes every day, and tomorrow may be a different issue, but we as parents continue to be the strongest advocates for our children’s rights.

At Undivided, we provide tools and knowledge to help you advocate in your schools, Regional Centers, IHSS, and both public and private health insurance. We’ve put together this resource with practical steps to help you navigate the uncertainties around the potential changes because we understand what’s on the line and how scary things might feel.

While we hope we can be of service and provide you with the most up-to-date and reliable information, we also encourage you to look for information from well-established national and state institutions. Here are a few national and California-centered examples:

• The Arc
• Autism Society
• National Down Syndrome Coalition
• Disability Rights California
• Disability Rights Education and Defense Fund (DREDF)
• State Council on Developmental Disabilities

For families who wish to take action and have their voices heard, we have suggestions whether you have three minutes or thirty. Use the links below to easily send a prewritten message to your federal representatives. If you have a bit more time to spare, consider writing a personal letter to your representatives.

If you have three minutes

Some of you will only have a few minutes to devote to this. In that case, these links allow you to enter your address and send a prewritten note to your federal representatives. To help stop Medicaid from being gutted, use this link from Caring Across Generations and/or this link from SEIU, the Union that protects IHSS workers. Here is a link from the Council of Parents, Advocates, and Attorneys (COPAA) to send a message to your representatives about the Department of Education and protecting our children’s rights.

You can also take a few minutes to make a phone call. The organization 5calls provides phone scripts for pressing issues to help you contact your representatives. Here are a few if you want a place to get started:

• Protect Medicaid funding
• Protect the Department of Education
• Defend Section 504

If you have more time

Consider writing a detailed letter to your federal representatives to remind them of the many ways the government supports families — and to share how much anxiety this uncertainty is causing. You might feel that your elected representatives have already made their minds up, but a heartfelt letter from your family can change the priority of their position against other issues. And if none of these concerns come to fruition, no harm done — but at least they’ll know how important these rights and benefits are to families like yours. Here’s what to do:

Step 1: First, decide who you are writing to.

• You can look up your House Representative here.

• If you live in California, your US senators are Senator Alex Padilla and Senator Adam Schiff.

• If you are outside California, check for your senator here.

Step 2: Write the letter.

SCDD has created this template “Medicaid Matters to Me” to help families and individuals with disabilities tell their story. This is what it could look like:

Dear Senator/Representative...

My name is ... and I live in ... .

I am ... . (Example: Person with a disability. Family member of a person with a disability. Care provider to a person with a disability.)

Here is what my life with Medicaid as it is looks like now.

Tell them about all the things that you can do with the support you get from the Regional Center (SDP), Medi-Cal, and IHSS. Tell them about what your child does in school and local sports programs. Tell them about things they might not know that children with disabilities like doing.

Medicaid makes it possible.

Tell them how Medicaid helps you and your family. Ex. Because we get help from the Regional Center, SDP, and IHSS, my family can ... . You can add: The rights my children has at school also make it possible. Without the supports, services, and rights that my child has to a public education, they could not participate in the community. Ex. Special Education/504 Plan/the Americans with Disabilities Act makes it possible because my child gets help to ... .

With Medicaid as it looks like now, I am not always able to:

Tell it as it is — it's not perfect! What is missing? What is your child still unable to access, and why? (Keep it short and to the point.) The point is that we still aren’t where we need to be, but cuts would be catastrophic.

If Medicaid is cut, and I have less support than I have now, I might not always be able to:

What will not be possible without this funding? Ex. Your child lives in your home in the community, not an institution. Without support, they may not be able to participate in community programs now or when they grow up. Think about how Regional Center has/does support you. How does IHSS allow your child to stay at home? Does IHSS allow you to stay home and provide the specialized support your child needs?

If IDEA and/or 504 is threatened, removed, or weakened, this would mean ... for my child.

Think of the difficulties you have now with getting your child what they need at school. We need federal protections because educational rights should be fundamental for all children, and we need to ensure the civil rights of students with disabilities are untouched. Without these supports, the 9.5 million children served by IDEA and 504 may not have access to a free, appropriate education.

Please also consider this call to action regarding protecting our Section 504 rights.

Step 3: Include a photo of your child/family.

Make sure to include photos of your child having the MOST fun ever and looking really happy.

Step 4: Send the letter via snail mail AND email.

You can also make an appointment to visit with your representative in their constituency office to advocate for Medicaid funding. Plan your visit and leave your letter as a reminder of your visit.

We know this time of uncertainty is hard for families, including many of Undivided’s own team members who rely on Medicaid and special education to fund services for their children. We will continue to do all we can to support our community and be a trusted source for resources and information.