Q&A: Donald’s story

The current proposed health care bill in Congress would repeal the Community First Choice Option, a Medicaid program that was established under the Affordable Care Act. This option provides funding to states to cover home and community based supports that allow people to live at home and with their families, rather than at hospitals, nursing homes or other expensive, isolated long term care settings. Here’s one story from a family that thrives because of “K Plan” funded services. You can take action by contacting your representatives in Congress.

Photo description: An older woman leans in close to a man who is smiling and lying in bed. He has medical assistive device attached to his chest with several tubes running from it.

Donald Anderson and Tami Sears

Q&A with Tami Sears about her son Donald Anderson

She told us, “We rely on this program to keep him safe and thriving. These programs work to reduce costs in the long run and allow families to stay together and care for their loved ones.”

Where does Donald live now?

Donald is 33 years old. He has always lived at home with me: his mother, guardian, and primary caregiver.

What kind of in-home support services does he receive?

Because of his high medical needs, he requires one-on-one and two-on-one, 24 hour support for all of his activities of daily living. He is on life support, oxygen, heart and oxygen saturation monitor, a g-tube, a j-tube, and food pump. He needs wound care, seizure protocols, and multiple medications.

Because of these medical needs, most people would find it difficult to care for a family member at home. By being able to support my son’s needs in the home, we are able to save the State of Oregon thousands of dollars.

You said that these services allow families to stay together. What would his life look like without those support services?

Donald is nonverbal. He uses a sound for “yes” and he will shake his head to communicate. It takes a while to understand and break down sentences for him to answer, but he will interact with the people he trust and loves like family and friends. Otherwise he is shy.

Photo: A man looks to the left of the camera. He is reclined and wearing a camo print hat, shirt, and blanket. There are several people standing in the dark background.

Donald Anderson at his birthday party

For those of us that do know him–myself and the other Personal Support Workers (PSW) that help with his care–he is very interactive. He has a very close bond with his PSW Travis. They share a special bond and Travis helped him fill out his person centered planning document.

It is medically documented that Donald thrives at home because of the care he receives from myself and his caregivers. He is alive today because he is not in an unfamiliar environment, without the support of family and trusted people to help care for him.

Without these services, Donald’s quality of life would suffer and my ability to provide this level of support would be detrimental to his overall care.

Without these services, my son would be continually hospitalized because of medical needs. Even when Donald is in the hospital, I never leave his side and still provide his support needs because he is nonverbal.

Having a loved one with medical issues on top of developmental issues is a daily challenge for families like us. We make daily sacrifices to care for our loved ones. Without the funds to provide these services, families are in jeopardy of being torn apart. The thought of my son in a placement, other than at home surrounded by love, is a thought I cannot bear.

Medicaid programs are so important to families like us. Having the ability to care for my son, on his terms, in our home, is a gift. It keeps the family unit together, promotes health and wellbeing, and it saves Oregon hundreds of thousands of dollars a year.

Let your federal representatives know how the Oregon Health Plan helps you. You can reach them at 202-224-3121 or use this link to find their mailing or email adddress. Make it clear that Medicaid caps and cuts will hurt people with disabilities.

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