Planning for an uncertain future

What happens when children with a disability outlive their parents?

Grant was born in Cottage Grove when babies were still born in Cottage Grove. He came a few months early, in one of the city’s two birthing houses and has watched houses go up and trees come down; he remembers when they built the Dairy Queen on Highway 99 and can name the year every neighbor on his block moved in. He’s lived in the same house his entire life — he’s just worked out a deal to have the exterior painted again, the first time since his mother commissioned the same work just prior to her passing 30 years ago. Thirty years is what Grant, now 70, figures he may have left.

“My uncle, who they say I’m built like, he lived just short of his 100th birthday,” Grant said, his inherited build standing well short of six-feet and easily tucked into the same size clothes he wore as a teenager when he graduated from Cottage Grove High School. The wiry tuft of his beard lays flat against his chin and billows out before settling just above his neckline and his eyes, protected by the bush of his eyebrows and the bill of his cap, still squint against the summer sun that hasn’t quite yielded to the last days of September. 

He’s on a tight schedule; he has to get to one of the dozens of organizations around town that rely on him to distribute their fliers advertising everything from community meals to plays to non-profit fundraisers. 

“If you say, ‘the guy who passes out the fliers’ everyone knows him.” 

Dave Johnson hasn’t known Grant as long as his wife, Wanda, has, but together they’ve been looking after him. But, that wasn’t the plan. Both of Grant’s parents left behind specific instructions and safety nets for their only child: His father conjured a deal to allow Grant to stay in the house with the stipulation that the local Masons and Shriners share the responsibility of ensuring Grant’s health and safety along with a trustee; his mother set aside money in accounts Grant could access after she was gone. 

His mother died in 1992, his father in 2001. Grant has outlived the trustee appointed in his father’s will and nearly all of the money is gone. 

“No one expected him to live this long,” Johnson said. “They thought, planned another 10 years.”

According to the Oregon Office on Disability and Health (OODH), nearly 700,000 people in the state are living with a disability — one-fifth of them adults over the age of 18 who qualify for services through the state in the form of third-party individuals or, more commonly, aids to assist family members in their care. But what happens when parents begin to age and children living with a disability require more care than they are able to provide?

Michael is his parents’ 10-year miracle. Rachel and Aaron had tried fertility treatments, foster care adoptions and had been scammed for thousands of dollars after an adoption fell through on their road to becoming  parents before Rachel found an ad for an adoption agency that specialized in placing children with disabilities. Their son Michael, not quite a year old, came home when he was two months old. Soon after, the couple dove head first into the support systems and research surrounding Prader-Willi Syndrome. 

“When we first got him he had failure to thrive, he was very weak,” Rachel said. “We were open, when we lived in Oregon. We had taken the classes and were registered to adopt through foster care, so we were open to children with special needs.”

Prader-Willi Syndrome is a genetic disorder that can cause mild to moderate intellectual impairment and an insatiable appetite. 

“In the more severe cases, families will lock their refrigerators and pantries because they can eat themselves to death,” Rachel said. 

The couple now lives in Kansas and juggles the dozens of appointments Michael’s condition warrants, including visits to an endocrinologist, urologist, dietitians, neurologists and therapies from swimming and — soon — horseback riding. 

It was part of the plan when they adopted Michael; how to manage his condition and planning continues to play a part in the couple’s approach to their miracle baby. Michael can’t quite hold his head up on his own like other babies his age and hasn’t yet spoken his first word, but Rachel says there’s no way to tell how severe his case is until he’s older. 

“If you google his condition you will see the worst cases but children with Prader-Willi go to college and they might just need someone to live with them to monitor their eating. And then there are the cases where they have to live in a group living facility,” she said.

So, they’re planning for everything. 

Michael’s grandparents, who joined a group for grandparents of children with Prader-Willi, are listed as his guardians should something happen to his parents. Meanwhile, Rachel and Aaron have begun to prepare for him financially.

But even that takes planning. 

“People will tell you he will qualify for this program or treatment. Then you call social security or Medicaid and he doesn’t because I make too much money,” she said. “Do we have family members that will help take care of him? Yes. When he’s 18, will we apply for him for Medicaid? Yes, because they don’t take our assets into account. We have looked at different places, there are post high school places and living facilities. But the hardest part, really, has been dealing with social security, Medicaid and health insurance.” 

Wanda found out Grant had supplemental health insurance by accident. Wanda knew Grant’s mother — they went to the same church—and for the last few years she has been taking him to doctor’s appointments and looking after him. She’s taken him to the social security office to try and have his monthly payment increased, arguing with telephone providers for him over the cost of his bill. 

“I took my phone down to the office and asked them how I’m supposed to press ‘1’,” Grant said, relaying a story about his missed doctor’s appointments due to his inability to confirm them on his rotary phone. Wanda and Dave got him a push-button line hard-wired in, in case of an emergency that interrupts cell phone service. 

Grant had seizures as a child, something Wanda attributes to his premature birth, and was placed on medication after he passed out walking home one day on the Swinging Bridge. 

“The doctor told him when he was 40 he could come off the medication and he remembered that. So when he turned 40, he stopped it,” Dave said. There haven’t been any noticeable side effects for the last 30 years and, at 70, Grant takes only one pill a day after fighting cancer somewhere around 2001-2002, he says. 

“I didn’t know that,” Wanda said about the diagnosis, “So now, we don’t miss that check-up either.”

Grant’s father’s will only named one guardian — a local man who has since passed away — and, according to the Johnsons, who are both over 50, there’s nothing in place if Grant should outlive them as well. 

“It comes down to planning.” Katrina Anderson works for Full Access, a brokerage for the state of Oregon that provides services for adults over the age of 18 with physical or developmental disabilities. Full Access is one of several brokerages around the state, a result of a 2002 lawsuit from families who had been waiting — in some cases more than a decade — for services after applying through the state. 

“I can’t count the number of times you meet with a family and it’s all about, ‘Ok, do we have a back-up plan? What is going to happen? Do you know somebody who can step in?’ It’s just working with the families on a regular basis to get that pre-planning piece.” 

But what happens when a family’s plan runs out before their child is no longer in need of services? According to Anderson, it happens and Full Access has placed individuals on emergency situations, working with ODDS. 

"They're services are not dependent on whether their parents are alive," said Sherryll Hoar of Oregon Health and Human Services. Individuals with disabilities apply through their counties for services-sometimes as children and once they reach adulthood, those services transition with them. However, services are individualized and if a person was relying on their parent to remain in their home,  the results of an assessment will determine the individual's needs which could range from transportation to work, an in-home aide or help entering an adult foster care or group home. 

Grant's family did have a plan, though according to the Johnsons, it was hindered by a generational norm to deny a diagnosis by his father. Now, the couple is simply trying to find a way to make the parties named in the will his father left behind abide by the terms to ensure the taxes are paid on the property so Grant can stay. 

"I don't care if they come here and shoot me," Grant said. "I'm not leaving this house." 

For Rachel and Aaron, they're depending on the plan; Michael has family both in Kansas and Cottage Grove who are willing to step in, and his parents are saving for his future. And while making plans for her child 20 years into the future is difficult, Rachel says it's more than that. 

"Planning for kindergarten is hard. It's a lot of what's looking into what's safe for him because sugar for a kid with Prader-Willi is like crack," she said. "Yes, there are challenges but he's brought such joy to our lives and he's the cutest kid ever. It's such a random mutation that, even if he was ours biologically, it could have happened. But he's just an amazing kid and he has a bright future ahead of him." 

Editor’s note: Last names were withheld to protect Michael’s in-progress adoption and to ensure Grant’s privacy in regard to potential future services or actions his situation may warrant. 

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