Q&A: Luke’s story

Tigard resident Luke Sang smiling and with a friend

Why does Medicaid matter? Read Luke’s story. 

The AHCA 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.

We asked Luke’s mother, Trudi Sang, how her son Luke benefits from Medicaid.

Where do you live? How old is your son?

We live in Tigard, Oregon. My son Luke is 29 years old

What kind of health needs does he have?

Luke is a Fragile X Syndrome affected individual, which puts him on a Autism like syndrome.  He has moderate to severe intellectual disabilities.  He only has hearing in one ear and has sensory issues, significant language delays, cognitive delays and emotional delays.

Luke with a Harlem Globetrotter

Luke is a huge Harlem Globetrotter fan. Here he is pictured with one of the Globetrotters.

Can you tell us a little about him, what he enjoys?

Luke loves music—especially Alan Jackson—he plays his guitar (open chord and copies actions seen on the videos—not playing chords but rhythms)

He loves watching on video and going to the Harlem Globetrotters.  He has balls signed by them and loves trying to spin his basketball.

He loves being at church and greeting people and the music.

He loves his family. He enjoys his dog and cat. He loves pizza, hamburgers, and chicken nuggets.

He enjoys watching and cheering on game shows like Wheel of Fortune.

He loves decorating the Christmas Tree and enjoys lights—just sad when it goes away for a year

He watches High School Musical and Crocodile Hunter

What hours are you typically at work?

I work 29 to 40 hours a week so I need supports from family or providers during that time.  I work at our church as a children and family pastor so I do have some flexibility but sometimes it is tricky to get the coverage I need. Family takes care of him on Mondays. During the rest of the week, he is in a group activity program two days and with a one-on-one caregiver who takes him out into the community.  He does have Lift support as well.

Luke with his dog with a High School Musical poster in the background.What difference do these services make in his life?

Luke loves to be out in the community and with people even if he has limited language expression.  It allows for him to have purpose, physical activity, peer connections, life experiences, and fun that he would not totally get if not receiving services.

He has grown up in a school system that looked at including as much as possible the larger community. When he is unable to be in the community, he has felt depressed and not as purposeful. Luke likes to help in his limited way and cares about others.

He make avoid eye contact, but is still social in familiar setting when he feels safe and welcome and also where he has been before.

What would his life be like without these support services?

He would be depressed and lethargic.  He would not have the opportunity to contribute to society like when they volunteer at Meals on Wheels or Union Gospel Mission store.

Luke is continuing to leLuke pictured with his dog.arn and grow. If not allowed in these supervised situations, his life would be more limited and secluded.  He would not be as challenged and stimulated.

It would also limit Luke’s interactions and would make for a less satisfying life. He would not get as much physical activity like hiking, walking, sports and the like.  He would not have contact with the community as he does now.

It would also make us limited and financially strapped. One of us would need to stop working and/or use our pay to support services. In essence, that would mean we would be better off not working. This would result in us moving or making other living arrangements.

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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