When the Caregiver Dies

Rita Vasquez knew early on that there was something amiss with her son, Gabriel. “As a child, he had difficulties,” she recalls. His cognitive and behavioral development lagged. Although no definitive diagnosis had been given, Gabriel was placed in a special education class as a youngster and remained in that type of class until he was in high school.

Rita Vaszuez and her son, Gabriel, wake up at 4a.m. during the week to get ready, have breakfast, play a quick game on his gaming console, then wait for the bus that takes him to work at Pride Industries.

Prompted by the observations of a school psychologist, Gabriel was given a diagnosis of autism shortly before his 17th birthday. “I practically fell off my chair,” says Rita, who had encountered the parents of a child with severe autism and knew the day-to-day struggles they faced. “It was almost more than I could handle.”

Rita and her husband, Joe, who passed away in 2015 after a three-year battle with colon cancer, devoted their lives before and after the diagnosis to caring for Gabriel, now 37. “It wasn’t always easy. Gabriel was a real pistol when he was a teenager, and it was hard on us,” Rita admits. But together, they managed.

Gabriel Vasquez enjoys the Santa Claus figurine given to him by his father, who passed away last year.

For 10 years, Joe coached Gabriel’s Special Olympics team, the Sacramento County Chargers. On the weekends, the family would swim together in the backyard or take their boat out to Lake Berryessa. “We got the boat because we wanted to have something that the three of us could do that didn’t necessarily involve other people, because when you have a child with a disability who’s an adult and goes everywhere with you, friends just drift away.”

With her husband gone, Rita is now Gabriel’s sole caregiver. She cooks all of his meals, does his laundry and makes sure he’s clean-shaven before he leaves their Sacramento home around 6 a.m. to catch a bus to his job at Pride Industries. Every two weeks they go to the bank together to cash Gabriel’s paycheck. “We always get $1 bills because he knows how to spend those,” says Rita. “He wouldn’t know how to spend $20 and get the right change back. He is very naïve, so he couldn’t go to the mall and shop around and not be taken advantage of by somebody.”

Since Joe’s death, Rita has had to give up some of the activities they enjoyed together as a family. “Life has changed now,” she says. “I had to have the pool buried and I sold the boat because I can’t tow it and launch it by myself.” But mother and son remain active. Three times a week, Rita takes Gabriel swimming at a pool at a local park. On the weekends, they visit the go-kart track. “It gives him a chance to do what other people do: drive. That’s a really important thing to a guy.” On Friday nights, they dine at McDonald’s if Gabriel has had a good week. The routines are important to Gabriel.

“I let him be himself as much as I can,” says Rita. “I gave up on what people think a long time ago. It’s not as though we don’t have friends—we do—but we are quite a bit alone. The people who I was friends with before Gabriel got older are all gone. They are busy with their own lives. To me, that’s hard. I feel judged and I feel like he’s being judged, but I can’t do anything about it.”

Rita, who is 68, ponders the future and what will happen when she’s no longer around to care for Gabriel. “What I want—and I don’t know if it’s possible—is for somebody just like myself to take care of him, because then I know he will have an active life.”

Millions of parents like Rita—parents of children with an intellectual or developmental disability, or I/DD—are forced to confront the daunting likelihood that their children will outlive them, and that the responsibility of caring for them will eventually fall to someone else. Nationally, more than 880,000 people with I/DD live with a family caregiver older than 60, according to The Arc, an advocacy organization for people with I/DD.

It’s safe to say that all parents, regardless of the health status of their children, worry to varying degrees about what the future holds for their offspring. Will any harm come to them? Will they be financially secure? Will they have someone to turn to during difficult times? But for parents of children with I/DD, such as Down syndrome or cerebral palsy or autism spectrum disorder, such worries are often compounded.

Personal safety is a primary concern. People with disabilities are disproportionately vulnerable to violence. According to the U.S. Department of Justice, the age-adjusted rate of violent crime against people with disabilities is nearly three times higher than the rate against people without disabilities. Among persons with disabilities, those with cognitive disabilities have been found to experience the highest rate of violent victimization.

And there are other vulnerabilities. Some individuals with I/DD may place trust in people who are out to take advantage of them, financially and otherwise. “People with a disability are a paycheck to some people,” says Dave Gaines, a disability advocate who is executive director of the Sacramento Autistic Spectrum & Special Needs Alliance and is on the autism spectrum. They might also engage in sexual activity without fully understanding the consequences of their behavior, or unwittingly become the victim of sexual abuse.

Dave Gaines, executive director of the Sacramento Autistic Spectrum & Special Needs Alliance

“The issue [of vulnerability] is huge,” says Kathy Campbell, a Sacramento-based marriage and family therapist who works with family caregivers. “You can’t anticipate every possibility or train your child to respond to every situation,” especially if the child cannot communicate or fully comprehend what is happening to them.

There are also practical considerations surrounding the loss of a trusted caregiver. For example, a parent who is intimately involved in daily caregiving is acutely aware of the countless details that can make a day run more smoothly: the person’s likes and dislikes, the circumstances that can trigger negative behavior, how to soothe the person after an unpleasant experience. It is extremely difficult to replace a caregiver who possesses that kind of deeply personal knowledge.

“It is the biggest fear for every parent in this situation: What is going to happen when I’m gone?” says Campbell. “In a few cases there are siblings who can take over, but for a lot of parents it just feels like a giant chasm that is so frightening they don’t even want to look at it.”

Yet preparing for what lies ahead is probably the best approach to alleviating any anxiety about it. “It’s going to be a lifelong battle of advocating for and accommodating your child. It’s important to come to that understanding early on and take a lifelong perspective, not just look at it from the perspective of childhood,” says Gaines. “You increase the chances for having true quality of life and happiness by advocating and planning for your child as early as possible.”

Devising a care plan for someone whose disability prevents them from living independently typically begins with addressing two main issues: Who will care for them after their parents are gone, and how will that care be paid for?

Kathy Campbell uses art therapy in her practice, where her dog Yoda, greets people at the door.

In California, the Lanterman Act ensures that services and support are made available to individuals with developmental disabilities so that they can live as independent and productive lives as possible. Eligible individuals and their families are served by community-based regional centers through which they receive assistance with things like housing, employment, therapy services, transportation, day programs and social and recreational activities.

The Lanterman Act represents a dramatic shift in attitudes and practices toward the disabled compared with a couple of generations ago, when an adult with I/DD who had even moderate needs might have lived most of his or her life in an institution. Today, the goal is for individuals to live in the least restrictive, most homelike setting available and to be integrated into the larger community as much as possible.

For some families, the ideal setup is for a sibling or another close family member to assume caregiving responsibilities in their private home after the parents pass away. When that is not an option, families might turn to a nonfamily caregiver, a group home or some other setting that meets the particular needs of the individual.

Rita’s wish is that Gabriel live with a paid caregiver in their family home when she is no longer able to care for him. “I’m not exactly sure how it’s going to work,” she admits. “I have a lot of anxiety about it. I think the hardest part will be finding the right person to care for him.”

Rita is not keen on the idea of a group home for Gabriel, in part because she believes it would be too hard on him to simultaneously lose his mother and leave the only home he’s ever known. “That’s why I’m trying to hang on to every penny I can for him, so that I have this option available. That gives me some peace of mind.”

For some families, however, group homes are an attractive option. Luanne Clayton’s 47-year-old daughter, Anne, is developmentally disabled and requires the same kind of supervision and assistance with daily tasks that a 2- or 3-year-old child would need. “My hope is to keep me healthy so that for as long as possible I’m able to make sure her future is promising and healthy,” says Luanne, who is 73 and Anne’s primary caregiver. “After that point, her comfort probably will be going into a care home.”

Although Anne has two siblings (one in California and one in Alabama), she requires more supervision than either of them could reasonably provide without giving up their jobs. Because Anne has had positive experiences with the day programs that she has attended, Luanne hopes she’ll have a similar experience in a group home. “They’ve really encouraged her to grow and to improve her communication skills,” says Luanne, who lives in Sacramento. “I feel that the services have been more than adequate. Anne really looks forward to going.”

Still, some disability activists say there aren’t enough high-quality group homes available to people with disabilities. “As a society, we need more backup for people who are dealing with this issue,” says Campbell. “People need to feel like there are going to be good group homes that their family members can go to and good-quality adult day health centers and adequate financial support. That is an ongoing struggle.”

Regardless of their loved one’s living arrangements, families of children with I/DD often face years of expensive care. Both Luanne and Rita have planned for their children’s financial future by establishing a special needs trust, which serves as a receptacle for assets intended for the individual with a disability. The assets in a special needs trust are typically used to pay for anything that government benefits do not cover. A trustee—in some cases, a professional fiduciary—is responsible for carrying out the terms of the trust.

“The only way to leave property to a person with special needs and still have them qualify for key government benefits is a special needs trust,” explains Brian Wyatt, a Sacramento attorney who specializes in special needs trusts and assisted both Rita and Luanne with their estate planning. “A person can inherit in a special needs trust and still qualify for Supplemental Security Income and Medi-Cal.” The trust also ensures that the funds are spent on the person with the disability and not for other purposes.

“For me, it was a big relief setting up the trust,” says Rita. “I know that the money I have set aside will be spent on him.”

Funding a special needs trust is a financial obstacle for many families, but starting early can help when it comes to setting aside savings or making investments. Wyatt says that purchasing a life insurance policy—and having a special needs trust to receive those assets—is a good place to start.

Setting up a special needs trust isn’t cheap—it’s not unusual to pay $2,000 to $5,000 depending on the complexity of the estate. But not having a trust in place can put a loved one in financial jeopardy down the road.

Some parents mistakenly believe that they can simply leave assets to another family member along with instructions to care for the individual with I/DD, but that scenario carries considerable risks. For starters, the chosen caregiver’s situation may change because of divorce, illness or a change of heart, rendering them unable or unwilling to fulfill the caregiver role. And there’s nothing to ensure that the funds will actually be spent on the person with I/DD. Plus, assets gifted to someone with I/DD from outside a trust could disqualify them from government benefits.

Other well-meaning parents believe that by disinheriting their child with I/DD, they can protect their eligibility for government benefits, but that is a mistake, says Wyatt. The better option is to funnel assets through a trust so that they are guaranteed to go to the person for whom they were intended while preserving their access to benefits.

In some cases, establishing what is called a conservatorship of the person is warranted for someone with I/DD if they lack the capacity to make adult decisions independently after they turn 18. In such instances, the court gives a conservator (usually a parent or other family member) the authority to make decisions about things like medical care, financial matters or education on behalf of the individual.

Attorney Brian Wyatt handles special needs trusts.

Finding an attorney who has considerable experience setting up special needs trusts and conservatorships is essential. Estate planners who are not well versed in the intricate maze of disability benefits might inadvertently set up a trust that does not serve the needs of the child. That’s what happened to Luanne, who before working with Wyatt had set up three different wills in years past.

“Every one of those wills would have hurt Anne, and I wouldn’t have been there to fix it,” she says. “The wills reflected my wishes at the time, and I thought my wishes were OK because no one was advising me otherwise. My advice is to get good legal counsel that’s qualified in this particular niche.”

If establishing a trust is out of the question because of financial hardship, there are still things families can do to plan for the future. “I deal with some parents who don’t have $20 a month to spend, so the reality is they’re not going to get an attorney, period,” says Gaines. “To those parents, I say build up your own resource folder, establish relationships with community organizations so that you’re not just relying on yourself. Advocacy can get you a lot, and there’s a lot that can be solved through knowledge of what’s out there and how to work the system.”

Even when all of the decisions about living arrangements and finances have been carefully thought through, a parent might still feel anxious about whether their child will thrive without them. A letter of intent can help. Usually written by one or both parents, the letter provides practical guidance about the person’s daily needs, special interests and personal desires.

“A letter of intent is very important,” says Wyatt. “We suggest that our clients keep a diary for a month about everything that they did on a daily basis to care for the child, then translate it into a letter that gets reviewed annually.” The letter should include everything from the person’s daily schedule and medical history to their religious preferences and favorite foods. It is also the place for parents to let future caregivers know that their child is a Giants fan who wants to be at every home game, or that she loves listening to opera music before bedtime.

Letters of intent are one way to help current and future caregivers become mindful of the needs of the whole person—not just their housing or medical needs, but whether they are enabled to experience personal fulfillment, an issue that Gaines is passionate about.

Anne (left) and Luanne Claton walk at Pioneer Park almost every morning. This gives Anne some exercise before she heads to the UCP day program she attends.

“The government can put a roof over your head and have someone give you food, but having that person treat you like a human being, having your emotional and social needs met, having your need for intimate relationships—your sexual needs, your friendship needs, your need for belonging—those things are much more complex,” says Gaines. “To treat that adult properly is a challenge for the caretaker.”

Gaines believes it all starts with truly knowing your child. “I say to all parents who have a child with a brain-based diagnosis, as early as possible in that child’s life you need to understand and recognize who and what your child is: how they operate, their strengths and weaknesses, their likes and dislikes, and their desires.”

Rita has done everything in her power to provide Gabriel with a satisfying life: helping him pursue his personal interests, devoting untold time and effort to his care, making huge personal and financial sacrifices. Nevertheless, contemplating his future gives her an uneasy feeling.

“Everything about all of this is difficult,” she says. “Sometimes I just have to put it away in my head because I can’t handle the knot in my stomach. That’s the best way I can say it. Probably the best thing now is that I feel like I have him at a really good point with everything that he does. I’d like him to be able to maintain that.”