Q&A: Marilyn’s story

Why does Medicaid matter? Read Marilyn’s story. Her sister Melanie describes what Medicaid-funded programs mean for Marilyn’s life.

Legislation is moving quickly through Congress to repeal the ACA. This bill threatens Medicaid programs. It would repeal the Community First Choice Option, a Medicaid program that was established under the ACA. This option provides funding to states to cover home- and community-based supports that allow people to live at home and with their families.

Marilyn & Mel as kids

Marilyn & Mel as kids

Tell us about your sister.

My younger sister Marilyn is 36 years old.

She was born with cerebral palsy, intellectual disabilities and a seizure disorder. Shortly after she was born, doctors told our family she would never be able to talk or walk, and would be a life-long burden to our family.

Today she’s able to walk short distances with a walker and have limited, but meaningful, conversations through her speech device and adapted ASL.

Marilyn’s a happy and loving individual.

Our family has had many ups and downs. Our father single-parented us for a number of years, and our step-mother has played a critical role in Marilyn’s care.

Marillyn & Mel: Then & Now

Marilyn & Mel: Then & Now

Giving Marilyn a chance to be a participating member of our family and her community would never have been possible without social programs and her Medicaid Waiver.

Where does she live?

She currently lives in Central Virginia at a group home with three roommates and 24-hour care. She attends a Community Resources Day Program daily where she sees her friends, assists local companies with easy manual tasks, and spends time out in the community.

Marilyn is a contributing member of society. What she may not be able to do intellectually she more than compensates for through her ability to teach people empathy and how to embrace inclusion and diversity.

She’s benefited from a Medicaid waiver in Virginia for the last 15-plus years. None of her services would be financially possible without this assistance.

Can you tell us a little about your sister, what she enjoys?

Marilyn is the embodiment of unconditional love. She’s affectionate, joyful, and also has all the usual qualities of a demanding little sister.

She enjoys her social time with her friends and roommates, watching movies and preparing meals together.

She also enjoys her time alone, writing and playing jigsaw puzzles on her iPad. Like many 36-year-old women, she likes to shop and get a manicure and dress up for special events.

More than anything else, she enjoys being treated like an adult, being respected, and being valued for what she can contribute and teach to others.

Marilyn Mel at Marilyns guardianship hearing

Marilyn Mel at Marilyns guardianship hearing

What’s Marilyn’s connection to Portland?

The plan has always been to move Marilyn to Portland, Oregon to be closer to my husband and me as my parents get older.

I have been looking forward to this next chapter of our lives. My husband and I moved to Portland 15 years ago with the intention of establishing ourselves here so we could care for Marilyn when my parents got older.

We were planning to make the move soon – the possible repeal of the Affordable Care Act has left our family (and I’m sure many others) in limbo as we anticipate an uncertain future.

Can you explain what the Medicaid Waiver means? What difference do these services make in her life?

Her ability to lead the meaningful and somewhat independent life she lives would be impossible without her Waiver. Her residential and day programs, and transportation to and from, are covered. She needs physical and speech therapy regularly, and is on a good deal of medication.

She’s also dependent on communication devices to express herself. This has been her largest source of frustration – not being able to express herself or be understood, in spite of the patience she has in persevering at trying to communicate. Her Waiver pays for these devices, and is critical to her well-being.

All these services that allow her to be mobile, to communicate with others, and be part of this family and her community would be impossible.

What would her life be like without these support services?

The ACA repeal would have a devastating impact on my sister and our family, and our ability to continue to maintain her fulfilling and positive quality of life.

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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