It’s All Relative is an exploration of all the different ways of being a family in the year 2019.
More American women than you think are currently waiting for their parents to die — knowing when that happens, they will end up caring for their disabled siblings. Their childhoods are a dress rehearsal for this inevitability: Research shows that in these families, starting in early childhood, sisters are much more likely than their brothers to help parents care for developmentally disabled children — for example, helping to dress or feed their siblings. As adults, sisters will often live closer to home than their brothers in order to support their families.
Once disabled children graduate from high school and age out of federally mandated special-education services, which expire at age 22 — a milestone that has been called “the services cliff” — families must ask not just what happens next, but what will happen after the parents are gone. “It’s only now where Medicaid and the state is saying, we can’t afford this,” says Annette Spallino, a Manhattan social worker who for helps dozens of families access sibling services, such as navigating guardianship laws and connecting them with support groups. The Trump administration’s proposed 2019 budget, for example, was criticized for making Medicaid and Social Security funding cuts that could harshly impact disabled people and their families. “Parents are going to pass away,” Spallino says. “The truth is, nobody else is going to take care of those individuals with developmental disabilities. Now, more than ever, siblings are being asked to step up to the plate.”
Below, three women share what it’s like to be ambitious in their careers, date, and communicate with their families while caring for a disabled sibling.
Sonia, 28, master’s graduate student in special education in Massachusetts
Her 26-year-old sister, Rekha, cannot walk or move on her own and was born with hydrocephalus. The condition causes extra fluid to build up in the brain, and the added pressure affects the brain’s function.
My sister is 80 pounds of dead weight. I distinctly remember being like 12, and all of a sudden my parents started going to the gym every day — they had kind of let go of their health but then they were like, if we don’t change, Rekha is going to keep getting bigger, and we have to be able to physically care for her. I started working out, too, and learned how to lift. All three of us have to stay strong enough to bend over for 25 minutes and bathe her, or carry her up and down the stairs, and put her in and take her out of her wheelchair.
When my husband and I were dating, I told him that one of my deal breakers was, if it comes to a point where my parents can’t take care of my sister, and he wants to marry me, he has to be okay with my sister moving in with us. He was like, that’s not even a question, that we would take Rekha.
One of our good family friends is into Hinduism. They believe in reincarnation, that our souls have certain lessons we need to learn in our life — and that the obstacles and challenges we face, even the blessings and the good stuff, are meant to shape us. How we react determines whether our soul has learned that lesson, [which] determines what our soul needs to learn in the next lifetime. [My friend] was saying, maybe somewhere my parents’ souls or my soul needed to learn how to care for someone wholeheartedly for a lifetime. And maybe my sister’s soul [had reached] a stage where all she needed was to be cared for by other people.
It was a really interesting concept to me, if people are religious or need that peace — to think that maybe my sister was so enlightened, she didn’t need to face any obstacles. She just needed a life where she was completely cared for. Rekha basically is the glue that holds my family together.
Nour, 24, medical student in Manhattan
Her 20-year-old sister, Yasmin, is on the autism spectrum and lives with their family in Connecticut.
Yasmin’s day starts at 6 a.m. I don’t need an alarm clock because I hear bloody-murder-screaming from the other side of the house when my dad is trying to wake her up. So, I say this in the most fond of terms, it is pretty chaotic.
My dad, my mom — actually, whoever is awake — lays out her clothes, takes her to the restroom, and chases her around the house [while] she’s doing all these repetitive behaviors, like taking off her clothes and putting them on again. Depending upon how much sleep she gets, these behaviors become more pronounced. I brush and braid her hair for her. She doesn’t swallow pills and she’s also epileptic, so my dad prepares a powdered mixture of her meds every morning, which she has with Nesquick and milk. She’s been doing this routine for years and years and years but from start to finish, it takes her from 6 to about 8:30 a.m., by which time she’s almost always late. Her car comes to pick her up from the school district at 8:10, and for the past few months it’s been consistently very, very stressful to get her out the door.
It is extremely difficult to study if I want to get early morning [studying in] at home. It’s very difficult to just focus on your day and try to remember all the things you want to accomplish. Our family’s perspective has always been that Yasmin will always live with one of us, even if it gets extremely uncomfortable for us for her to live here. Living in an assisted-care facility is not an option. We are all just too afraid she won’t like it, she’ll be isolated. Or, she might be assaulted. She’s not verbal, so there’s a risk that she can’t communicate something awful happening to her, especially because she’s a woman.
The history of psychiatric facilities in this country, in any country, is really, really scary. We’ve grown up with this fear since we received this diagnosis when she was 2 years old. My parents were very up-front, like, this is your little sister, she needs your help, don’t ever let her down. It’s started to hit me. I’m 24 now. If my parents pass away, my sister will be my responsibility.
Rachel, 25, policy advocacy specialist in St. Louis
Her 23-year-old brother, Sam, has a chromosomal disorder that affects his brain function. He lives with their parents in Chicago.
If my parents were to pass away, like drop dead right now for example, I would be the one calling the shots. I think my parents have tried very hard to have me live my own life at this stage in my life, [but] I just know when my parents go or are not able to make decisions around his care, which could very well happen in the next ten years, it will just become a part of my life.
Sam is 6’2, 160 pounds, and cognitively, a 7-year-old. He is functioning enough where he can read and write. He’s extremely social but he will never live alone and never drive. I think my parents have recognized that him living at home is not stable. My dad is 71, and my mom is 65, so that puts even more of a strain on the situation.
My dad just retired, but Sam requires round-the-clock support — in the middle of the night, early [in the morning]. He’s always a big personality, and it’s too much for my family. [My parents have] been actively trying to get him into an assisted-living facility as a full-time living situation for the past year. And that has been a heck of an experience. There’s a huge wait list. [The facility] is waiting for individuals who live there to die off so that there is a bed available. The state and the system isn’t just. It’s a symptom of a larger national lack of commitment to supporting adults with disabilities.
I hope that he will be at a home where he is able to have structure and be supported in the way that he needs. Let’s say that didn’t work out? There is no Plan B. But he’s not going to be on the streets. I would do whatever I had to do, whether that’s having him live with me, or I don’t know what. There’s a chance that something could happen to Sam, too. He’s just high-risk everything. High-risk for running into the street and a car hitting him. High-risk for someone getting mad at him and him getting shot. High-risk for falling and hitting his head. There’s just so many unknown factors. I kind of don’t let myself go into the “what-if” world.