Mary Kate. Photo by Kendra Heisler.
When Mary Kate Graham, 40, was a baby, people would often ask her mom if she thought something was awry, as the infant had trouble sitting up and changing position on her own, and was preternaturally quiet.
“I kept saying, ‘She’s just a good baby, can’t you believe that?’” Mary Kate’s mom, Maureen, tells Yahoo Parenting. She is sitting on the couch in the Brooklyn three-bedroom apartment she shares with Mary Kate, who is at her side. Next to Mary Kate is her older sister Meg, who lives four flights up in the same building with her husband and 8-year-old son. “God knows I needed a good baby — she was my sixth!” she adds with a throaty chuckle, and all three women burst into good-natured laughter.
But Maureen says she even rebuffed the professionals who noted her daughter’s stillness at a nearby early-intervention clinic, where she was already in the midst of having a school-age son assessed for a learning disability that turned out to be dyslexia. “I would just say, ‘There’s nothing wrong with her,’” she recalls. “Denial,” he adds, “was where I was living.”
By the age of 2, Mary Kate was diagnosed with “mental retardation,” a term that’s since been replaced with intellectually or developmentally disabled (I/DD). But now, decades later, there’s a different, more subtle sense of denial pervading the Graham household: This one’s regarding what will happen to Mary Kate upon the death of Maureen — a 76-year-old widow with diabetes who recently underwent open-heart surgery. “I’ve been working towards Mary Kate being independent with some help somewhere,” she says, noting that she’d rather her daughter stay on in their apartment alone (with Meg upstairs) than enter a group home. “I don’t know what that help is,” she admits, “but I’ll figure that out somehow.”
The need for Maureen to simultaneously face her own mortality and plan for her daughter’s future is an emotionally challenging one, to say the least. And she’s far from alone in having to sort it all out: In the U.S. today, there are an estimated 600,000 to 700,000 adults with I/DD who are living with aging caretakers and who have no plan for their future, according to the Arc, a national nonprofit that protects the human rights of people with such disabilities.
“Many of us have trouble dealing with our own mortality,” Robin Shaffert, senior executive officer of individual and family support for the Arc, tells Yahoo Parenting. “But the complexity for parents of children with a significant disability is that they’re so used to providing the support that they can’t envision an alternative.”
The state of future planning for adults with intellectual disabilities has come a long way from just a few decades ago, when the norm was for doctors to tell parents of intellectually disabled children that the best long-term plan for them was to live in institutions — where abuse and inhumane treatment was rampant. But a movement of parents who wanted something better for their kids began in the 1950s, through the formation of community-support programs around the country, including the Arc, which launched a dedicated future-planning program in Dec. 2014.
Mary Kate and her mother, Maureen. Photo by Kendra Heisler.
“My mother and father worked very hard for Mary Kate,” explains Meg, whose father died of emphysema a decade ago. “They were very big advocates, teaching her early how to be travel trained, how to live independently to best of her ability. Compared to her friends, she’s pretty high functioning. My dad was also very protective and wouldn’t let her do some things, but when he passed on, Mary Kate began to take the reins a little bit more.”
Maureen, early on, enrolled her daughter in a nearby Montessori school with a special-ed program; later, she got her involved with social outings through a local chapter of YAI/National Institute for People With Disabilities.
Mary Kate explains that she first had an inkling of her disability when she was about 6 years old. “I got treated differently in my neighborhood,” she recalls with fresh hurt in her voice. “I was not invited to a birthday party and every other kid was. All the kids were invited except me. My mom was like, ‘Why wasn’t Mary Kate invited?’ They said, ‘Well, she’s different.’ It was major.”
Meg who was closer with Mary Kate than any of her other siblings, often stepped in for her. “I was very protective of her and was with her a lot, probably even more than my mother was,” she recalls. “At one point her speech impediment was very bad, and I was the only one who could really understand her. So I would translate, even for my mother.” Meg was often self-conscious while in her sister’s presence, but learned to get over it quickly. “I don’t put a lot of stock into what other people are thinking,” she says, “because if I did, then I would have been embarrassed all the time when I was a kid.”
Today, Mary Kate has achieved an admirable level of independence: Lately, she’s been learning to cook basics, like pasta and eggs, and to improve her reading skills (at about a first-grade level) through using cookbooks. A social worker has begun to prepare her for figuring out simple finances, and Maureen has set up a trust and made Meg her legal guardian. Mary Kate is also employed by YAI’s preschool, and has been performing onstage with Brooklyn’s unique Dream Street Theatre Company — a special-needs troupe — since its 2001 inception. In December, she took part in its annual holiday variety show, wearing a dramatic black dress and reciting Maya Angelou’s “Phenomenal Woman” with a confidence cadence; the room, packed with friends and family members of all the performers, erupted into applause. (“Mary Kate learns by repetition — if you repeat it enough times she keeps it in her head,” explains Maureen, who said she recorded herself reciting the poem so that her daughter could listen to it over and over again.) She’s also had a boyfriend — Gary, who has Down syndrome — for 22 years, and the two spend a couple of supervised evenings together each week.
Meg, Mary Kate, and their mother Maureen. Photo by Kendra Heisler.
Still, there’s a fear of Mary Kate being too trusting, too naïve, to unpracticed in the ways of the world to be in it alone. And Meg says she’s been keenly aware from an early age that care of Mary Kate’s would eventually rest on her shoulders. “I was really completely overwhelmed by the future,” she says. “And when my mother got sick [recently], we really started to see who emerged, and that was me. So once I saw that, I was like, this is it. I know my role.”
Of Maureen’s six children, her three sons have moved away. A daughter is institutionalized with schizophrenia. And that leaves Meg, although she has a family of her own to think about (and a busy schedule of homeschooling her son and other children as part of a local cooperative).
“The only one left is Meg, but I don’t want a hostage situation,” Maureen says. “I don’t want Meg to feel like she has no choice, like she can’t do anything and has to stay here.” But Meg does sometimes feel that way, and it concerns her.
“I feel like, what if down the road, I don’t know, what if my son grows up and he goes and lives in California, and I want to be with him, then what? I don’t want Mary Kate to feel in any way she’ll be kicked to the curb or forgotten about. But I want my freedom, because then I’ll grow resentful, and that’s not going to be good for her or me. So it’s a conundrum. I do want her to know that I love her,” she says. “She’s my sister.” Meg believes that Mary Kate would thrive in a group home, although Maureen has serious reservations about the idea — which is not uncommon among parents of developmentally disabled individuals, according to Tom Ott, a longtime YAI social worker in Brooklyn who has known Mary Kate and her family since her adolescence.
“When I call parents about a residence opportunity, 99 percent of the time they’ll say their child is not ready yet,” Ott explains. “They’ll say, ‘I want them to live with me for as long as I’m alive.’” He then presses them to help their child make the transition sooner rather than later. “I’m not shy at all about bringing up the issue of a parent dying,” he adds. “I say, ‘It’s your decision. But probably the worst time to have your child move somewhere is when you die.’”
Options besides group homes, explains Shaffert of the Arc, include living either alone or with a roommate, coupled with having the support of either a case manager or relatives. Professional services are sometimes provided by Medicaid waivers, or else paid for out-of-pocket by trusts. “One of the things that’s evolved is the concept of home and community-based support services, tailored to the individual, with that individual having a voice in what they need and how their money is spent,” she says. Shaffert suggests parents create a support team for their child’s future plan, “envision” where they might wind up living and then to move forward to make it happen. She also advises parents keep an accessible list of their child’s likes and habits so they’re not left adrift in the case of a caretaker’s sudden death.
Maureen has her own advice for other parents of intellectually disabled kids: “You have to be open to listen, and to asking, ‘what did you do?’ Be involved with other people who have been there, because they can help you.” She adds that, ironically, her recent heart surgery has helped her feel more hopeful about Mary Kate’s future. “My surgery was a gift to me, because I could see from all the experiences during that time that Mary Kate can do this,” she says. “One day I woke up, I was in the rehab, and she walked right in the door. I looked at her like, who came with you? What are you doing here? I said ‘How did you know how to get here?’ She took the bus.”
“I was like, ‘Calm down, Ma!’” Mary Kate recalls, laughing. And, Maureen says proudly, “But she did it.”