John Higgins is 58 and needs to live in a nursing home.
He has late-stage Huntington’s disease, a progressive neurological disorder he inherited from his parents. The disease has already robbed him of the ability to hide his involuntary muscle movements, which means he can’t work. He can still walk up and down stairs, eat a sandwich and speak, but eventually he will be robbed of that, too.
“It’s progressed rapidly,” Higgins said. “I’m shaking a whole lot more.”
Higgins is homeless. He stays in the AbleDisabled group’s meeting room at the Denton Community Health Clinic during the day. Until recently, he spent most nights at Denton’s emergency shelters. Now, his disease has progressed too far for him to stay at the Salvation Army shelter and the Monsignor King Outreach Center.
He moved to Denton several years ago to be closer to his sister. He spends the night at her place once a week, but she can’t care for him full-time. The disease is hard on families, too. People with Huntington’s can develop dementia as the disease progresses.
The clinic staff scrambled to help Higgins apply for disability benefits and the Star-Plus Medicaid waiver that will pay for a nursing home bed. He’s got the waiver and his benefits decision is pending.
“I’m ready,” Higgins said.
For the past several years, he’s lived on the street, but that’s not an option anymore. He fears for his safety.
“My movements get more crazy,” Higgins said, adding that they can scare people. “I got slugged one time.”
His spine drives his torso like a fish through water. His head bobs and weaves, but like a boxer, his eyes always find their mark. His arms and legs make frequent, quick, big movements that seem unpredictable at first, but have a rhythm of their own.
He works within the ballet of a jittery leg and swooping arm to tie a loose shoe lace or pick up a special dinner plate to demonstrate the edges that keep him from spilling his food. He falls sometimes. But all that motion hasn’t changed him into a scary person.
“I won’t cause any trouble,” Higgins said, adding with a twinkle, “I’m sure everyone says that.”
However, more than 15 area nursing homes have turned him down so far, said Jessie O’ Brien, a registered occupational therapist at the Denton Community Health Clinic. She still has a few leads, but she’s getting worried. Facilities aren’t locally owned anymore, and Higgins’ case has local administrators running any kind of admissions decision up the corporate ladder.
Huntington’s disease is rare. According to the National Organization for Rare Diseases, about 30,000 Americans have Huntington’s and another 200,000 are at risk of developing it.
“There have been a lot of tears the past few days,” O’Brien said.
Patty Ducayet, the state’s long-term care ombudsman, said nursing homes can’t discriminate but also must have the staff and training they need to take care of someone they admit. Sometimes nursing homes will admit someone they cannot take care of and discharge them later, which can further hurt the person. Advocates are working to end abusive discharge practices with Texas House Bill 2285, which is being heard in the Human Services Committee on Tuesday.
“This is incredibly important to us as we strive to help people,” Ducayet said.
Cases like Higgins’, which have a complicating medical factor to them, can make it harder to find the right place for care. For example, fewer than 40 nursing homes statewide are certified for long-term care of Alzheimer’s patients. But the statewide network of ombudsmen shares information and may know of facilities that are doing well with residents like Higgins.
Higgins said the disease frustrated him more a few years ago. For now, he’s taking it day by day.
“I’ve always been looking for a place to live,” Higgins said.