Watching the Chainsaw Come For Me

Cuts to Medicaid and Disability Independence

by Cassandra Brandt

I didn’t have anything to worry about with the threat of cuts to medicaid and my independence, they said. My need is legitimate. My disability is severe.  I’m a C3-4 quadriplegic, paralyzed from the shoulders down. I rely on the social safety nets in place: Social Security Disability checks pay my bills and Medicaid and Medicare pick up my hefty healthcare tabs, frequent cab rides to appointments, and caregiver services that allow me to live independently. If these services are cut, so is my autonomy; I’ll be back in an understaffed institution.

Ten years ago, a car accident stripped me of my able body. Secondary complications due to my spinal cord injury make me a frequent visitor of my local hospital and physicians’ offices. And I swipe my Medicaid card every day just to get out of bed. My personal care attendants get me in the shower, dressed, transferred into my power wheelchair, fed, and ready to face my day. At night they assist me to bed. They are my arms and legs.

Still, I watched the chainsaw wielded on stage aimed right at the slice of pie I depend on. And I read about the slashing of “optional” services I rely on and potential closure of my local hospital if too many people in my community dropped off Medicaid. My worry is legitimate. My worry is severe.

While the administration isn’t imposing work requirements on people with severe disabilities, by imposing them on a significant portion of the population, we are at risk to be inadvertently affected.

I live in Arizona, one of the many states that expanded Medicaid to cover all low-income individuals under the Affordable Care Act. That coverage could be ripped away next year per the legislation recently passed. 

My hospital, which serves a community of less than 40,000, will likely see an influx of uninsured patients and may be forced to close. It’s one of the country’s Critical Access Hospitals, meaning their closure would have a significant impact on our community due to their distance from other healthcare facilities. If my hospital closes, I’m looking at a 70-mile trip to the nearest emergency room. 

Other medical providers may leave the community too. A good number of the practicing physicians in my community work out of the local hospital.

Not only are rural communities like mine disproportionately vulnerable to potential hospital closures and reduced access to care, but home health agencies may also close their doors and personal care attendant providers may stop servicing some communities. 

Medicaid pays for home and community-based services (HCBS) which help individuals with disabilities maintain their independence and live in their homes. Currently, Medicaid covers two-thirds of all home care in the United States, servicing about 4.5 million people annually.

Home care includes skilled nursing visits as well as personal care attendants. Skilled nursing may address issues such as urinary incontinence and skin integrity. Personal care attendants help people with disabilities get dressed, get out of bed in the morning, get in the shower, and get to the store. Without these services, many individuals with disabilities would have no alternative but institutionalization.

Although institutionalization is three times more expensive for taxpayers than homecare, homecare services are not as widely available because they aren’t required to be in place. Provision of these services will be relatively easy for states to abandon under this administration. 

Once again, independent living for people with disabilities is impacted. 

I’ve fought hard to exist in this world alongside those with able bodies. As an American with a disability, I feel unseen. Unless it’s a greedy politician with an eye on my benefits; then I’m apparently a target. Last month, dozens of protestors, including individuals in wheelchairs, were arrested inside a U.S. Senate building for “illegally demonstrating” against these horrific cuts. 

The National Disability Rights Network said these cuts to Medicaid are “not just numbers on a page but lifelines being pulled from individuals who depend on them”. The American Association of People with Disabilities responded to the bill’s passage by stating, “This Is A Devastating Day for Disabled Americans”.

The potential repercussions of these cuts are fatal. A study found thousands of deaths could have been prevented if all states had expanded Medicaid under the Affordable Care Act. Instead, this administration is pulling lifelines.

I can only hope my community hospital is spared, my community-based services untouched. I can only advocate for myself and millions of other Americans who depend on our legislators to refrain from cutting holes in the safety nets that are in place for us… and every American should they acquire a sudden disability. 

If you depend on Medicaid, tell your legislators. In sharing our personal stories we can convey the vital importance of Medicaid coverage in our communities.

What You Can Do to Help & How to Contact Your Elected Officials (from DREDF) 

Contact your members of Congress. Use the script below or this script to talk to Congressional offices on the phone. To send a letter automatically to all of your representatives at once, use this letter-sending tool from Caring Across Generations or this letter-sending tool from the Arc of the United States. Add some personal information to the message tet if you would like. 

Tell your officials, “Hands off Our Medicaid!”

• Use this search tool to find out who your elected officials are.
• Fill in your address.
• Select “Federal Officials.”
• Select each of the names listed.
• The contact information for your representatives will appear.
• Call the phone number listed, and use the sample call script.

Send Your Own Letter

Go to the representative’s website that is listed in the search tool. Select “Contact.” Either send the letter to the email address listed or fill out the contact form. Then, copy and paste your letter into the “Message” field.

Sample Call Script:

My name is [your name] I live in [your city, your state]. My address is [your address].

I am a person with a disability. [Say more about your disability].

I care about Medicaid. Medicaid helps people with disabilities live independently in their communities. Medicaid helps keep people with disabilities out of nursing homes and institutions.

17 million people with disabilities and older adults use Medicaid to pay for their health care. Over 6 million kids with disabilities have Medicaid as their health insurance. Medicaid pays for 70% of long term health services–most of these services are not covered by Medicare or private insurance. I urge you to do everything in your power to protect Medicaid. Cuts to Medicaid of any kind–through FMAP changes, work requirements, block grants, or per capita caps–are unacceptable. Work requirements will harm people with disabilities–they make it harder for many people with disabilities and their caregivers to access Medicaid. Work requirements will make people lose their access to Medicaid. Do not vote to cut Medicaid in any way!

Thank you.

SAMPLE LETTER: 

How to use this letter:

• Delete the italicized text and fill in your own personal information.
• You can leave the normal text in the letter.
• Fill in or delete the [bracketed and bolded text] before sending the letter.