I Fought for My Daughter to Live at Home, And Congress Wants to Take That Away From People With Disabilities

Being a mother has been one of the most gratifying roles of my life. As many parents will attest, there sometimes comes a moment in parenting where you discover strength you didn’t know you had — all because your child needs you.

For me, that moment began 39 years ago when my daughter Katie contracted viral encephalitis, an inflammation of the brain at just four months old. It compromised her tiny immune system and did irreversible damage to her body, requiring her to use a ventilator to breathe and leaving her partially paralyzed. Because of Medicaid rules at the time, we could not take Katie home to manage her care, as we wished, but instead, we were forced to keep her hospitalized for three years as we fought the system.

Katie Beckett at the hospital

Our family reached out to everyone until eventually word of Katie’s plight reached President Ronald Reagan himself, who created the Katie Beckett Waiver in an act of compassionate conservatism. The creation of a new federal program allowed people with disabilities to use Medicaid dollars to get health care while living in the community. Ultimately, the Katie Beckett Waiver took effect and Katie came home.

Under the waiver, Katie and so many other children like her could qualify for federal support to get the care they need to thrive and live at home. Katie was able to do this for 34 years — she passed in 2012 — more than three times the age doctors said she would reach. She received home health care that allowed her to attend college, get a job, help advocate for others with special health care needs, and, most of all, live a healthy, happy, and independent life.

Katie Beckett in lap

The Katie Beckett Waiver also saved health care costs for taxpayers. Katie alone saved federal government hundreds of thousands of dollars in Medicaid funds for the first 10 years of her life since she was home instead of in a hospital. This was because it was less costly and better for her health to have her with us, getting the one-on-one therapy and assistance she needed to be able to live independently. This waiver meant so much for us and for Katie that I proudly display “waiver mom” in my email address to this day.

Unfortunately, Congress is now considering major cuts to federal Medicaid funding that would put the future of people like Katie at risk. Bills in the House and Senate each propose to slash billions of dollars from Medicaid over the next 10 years. What most people don’t realize is that states can limit how many people receive home and community-based services, forcing people with disabilities to wait years before they can access them. And since Medicaid law prohibits states from running a waiting list for care in an institution, this means that these Medicaid cuts will fall mainly on in-home care. This would force people with disabilities to accept institutionalization to get vital, life-saving supports. Families would once again have to visit their loved ones in institutions and hospitals instead of living with them at home.

Beckett Family Picture

It’s unacceptable to Katie’s memory and to people with disabilities across the country that the services I fought so hard for are now being threatened by Republican members of Congress. We cannot anticipate future needs, which is why it is so important to preserve the Medicaid program. It needs to continue to be there when people need it the most. All people who receive care from the traditional Medicaid program and those who access home care through Medicaid waivers will be hurt by the changes being debated in the Senate right now.

I urge our elected officials to help protect my daughter’s legacy and people with disabilities’ future by preserving Medicaid. The Senate is voting tomorrow on a motion to proceed that would allow them to begin the process of repealing the ACA and gutting Medicaid. We must stop this bill. Please call, email, visit, join a rally. A parent’s strength is a powerful thing, and it’s time for all parents to come together to tell Congress to save Medicaid for people with disabilities.

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Eliza

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Karen Blaine

Julie, We met years ago at a meeting while you were still fighting for the waiver. My daughter received one of the first waivers in Washington State. She lives in her own home and is able to participate in the community. She is 41 years old and the waiver has allowed her independence and quality of life. Every administration that cuts medicaid dollars cuts back her hours of services. We are at a breaking point as her health is in jeopardy with further cuts. I am incredibly grateful for the work that you did. We will continue the fight. Thank you.

Anonymous

Thank you from the bottom of my heart- my husband and I had 7 beautiful years with our son at home, thanks in part to the Katie Beckett waiver!

Devoney Wolfe

Thank you for your advocacy. Your work helped my son. God bless you, and may He help me have the strength to fight this current battle for Medicaid as I must.

Anonymous

Thank you.

Heather Hussey

Words cannot express our gratitude. Your efforts and triumps have blessed our family many times over. Thank you!

Anonymous in Ohio

My son too had encephalitis, needs 24/7 care. Thanks to the waiver gets to live at home with homemaker personal care. It would cost the government much more to have him live elsewhere. Thank you for your advocacy. I have emailed and called my Senator about voting no to reduce benefits.

Anonymous

My son was in the Pediatric Intensive Care unit over Easter of 1981 with Katie and I
remember her well. Republicans worked to help change the law. This was the old GOP. I was saddened by her passing. I stand with her mom in hoping for better treatment of children and families .

Anonymous

If you read the Senate bill, which did not pass, the initial medicaid cuts was to restore the medicaid program back to its original purpose of providing insurance to the disabled, children in poverty, elderly in poverty, and the blind. The ACA added millions of able bodied adults with no dependents making up to $50k to medicaid. After many years, they were proposing block grants to the states based on the enrollment numbers in medicaid in each state with exemptions for the original set of qualified disabled people. This block grant would grow based on inflation of medical costs which would result in slower growth and the spending of the block grant would be determined by each state. The way i understood this was that it would actually help preserve medicaid for our disabled children instead of spreading those dollars amongst those that can help themselves through employment.

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