Medicaid Beneficiaries Who Need Home and Community-Based Services: Supporting Independent Living and Community Integration

Mark, Age 43, Nashville, Tennessee

A group home placement would increase independence for working man with autism and ease the burden on his elderly parents.

Mark has autism and intellectual disabilities. He has lived with his parents for his entire life. Mark’s mother, Jackie, always has been his primary caregiver, but it is becoming increasingly difficult for his parents to care for him now that they are getting older and developing their own health issues.

Mark has worked as a grocery store courtesy clerk for 12 years and enjoys having a “real job” outside of a sheltered workshop. He is very rigid about his daily schedule and will not deviate from his routine, such as the time he goes to bed, which can be difficult and limiting for his family. Jackie thinks that Mark probably could be more independent than he is. For example, he might be able to learn to get his own breakfast and do his own laundry. He bathes and dresses himself but needs help with shaving because he will not look into a mirror. He also will not talk on the telephone so his parents never leave him alone because he would be unable to call for help in an emergency. Jackie says that Mark needs 24/7 supervision, and ideally, she would like him to live in a small group home. She would like Mark’s move to happen while she is able to assist with his adjustment during the transition.

Receiving waiver services would give us a lot of peace of mind… I don’t want to be at a crisis point to receive services… I want to be able to help with the transition…”
-Mark’s mother, Jackie

Mark wants to live on his own because he wants to be like other adults his age, and Jackie says that he used to perseverate about having his own place to live. On the day of his initial interview for Medicaid waiver services, he stood in the driveway for a long time waiting for the caseworker to arrive. Now, Jackie feels that Mark has “sort of given up,” probably because he has been waiting for so long: Mark has been on the HCBS waiver waiting list for 20 years.

Mark is dually eligible for Medicare and Medicaid, but he is not currently receiving any HCBS due to the waiver waiting list. Jackie says that she has “no hope” of ever receiving waiver services because Mark’s case is not considered “urgent.” She receives an annual letter from the state confirming that Mark is still on the waiting list and asking if he still wants waiver services. She no longer calls the office because she says she “never get[s] any answers” and instead is “passed around from person to person.” Jackie does not even know who Mark’s caseworker is at this point. Jackie never expected to have to wait this long for services. She is frustrated and says she “has just about given up.”

Jackie also wishes that Mark had a social outlet and friends his age. She believes that moving to a residential placement would help Mark with this aspect of his life as well. She says that Mark only has his job and his family for social interaction now. Receiving Medicaid home and community-based waiver services “would make all the difference in the world” for Mark and his family and provide peace of mind for his parents.