Advocates for Adults with Developmental Disabilities Needed Now More Than Ever

Take a minute and picture yourself at twenty-seven.

Chances are you’re thinking about things like the job you held at that age; maybe it was your first “real” job, and you soldiered through the endless grunt work just to get to Friday happy hours with coworkers.

Maybe you had your first apartment, and spent half the time contemplating that the exorbitantly high rent should at least ensure the heat worked properly. Or maybe you got married at twenty-seven, like I did. Perhaps you already had kids.

Whatever your situation, by the time you were twenty-seven your life had been determined by a series of decisions you made for yourself. However, there is a whole population of people who do not get to make those decisions for themselves. And those people need us now more than ever.

My sister Christine is twenty-seven, autistic, and intellectually disabled. As a result, she is unable to live independently. None of the scenarios presented above will ever be available to her. She lives with my parents, who are both sixty-one. My mother is a teacher and my father is retired from the postal service. He has a part-time job as a church sacristan. They are both still full-time parents.

Each weekday Christine gets picked up by a bus from Smart Pick and travels to HeartShare, where she participates in an adult day program. There she has the opportunity to learn life skills as well as partake in recreational activities. HeartShare is a wonderful program, and Christine seems very happy there. However, the decision to spend her week there wasn’t made by her; it was made by my parents, after countless hours of research, discussions, and visits to many different dayhab centers.

The fact that adults with developmental disabilities are not able to advocate or make decisions for themselves unfortunately often results in people treating them without the dignity they deserve. This devastating reality culminated for my parents and sister this past Wednesday night.

As I do on most Wednesdays, I went to my parents’ house after work for dinner. At around 3:30 we sat down on the porch to wait for Christine’s bus, expecting her to arrive home within the half hour.

As we chatted about our respective weeks, my mother and I realized the time was now approaching 4:30 and Christine still wasn’t home. A half hour late seemed cause for concern. “If she’s not home within the next fifteen minutes I’m calling the bus company,” my mother decided.

Fifteen minutes later she was on the phone with Joanne from Smart Pick, who claimed the bus had left the program almost an hour late because they had been waiting on an inspector’s visit. Additionally, there was a substitute driver that day. “We ask that you please be patient,” Joanne said. “The substitute drivers do the best they can since they don’t know the routes.”

My mother reminded Joanne that she was being patient, since the bus was already an hour late. And why hadn’t anyone from the company called if they knew the bus had been held up?

“We weren’t aware of the situation until now,” replied Joanne, who seemed to have a convenient excuse at her fingertips for every question tossed her way. “You’re the first parent who’s called us.”

My mother hung up, dissatisfied with Joanne’s dubious explanation. “If the bus had really left that late, HeartShare would have called. They always do. You can bet I’ll be asking them tomorrow if that was true.”

Spoiler alert: It wasn’t, and that turned out to be the first lie of many that Smart Pick fed my parents over the course of the next four hours. My mother called again a half hour later. This time patience wasn’t in the cards. She demanded to know the bus’s current location. “Main Street and 86^th,” she was told. “They have three or four stops left to make.” A half hour after that? “Jamaica and Van Wyck, two or three more stops.”

So that would mean that, in a half hour, the bus traveled approximately a half mile and dropped off one person, if that. At this point my mother was becoming visibly upset. How were we supposed to believe anything they told us? The bus, and our Christine, could have been anywhere. And the company seemed to be making up whatever stories they thought would get us to stop calling.

At 7:00 my father, who had now taken over phone call duty, was told the bus was on Woodhaven Boulevard and had three more stops to make, despite the fact that we had been told two hours prior that it had “three or four more.” Woodhaven Boulevard is five blocks away from us, and the other two stops—one on Eldert Lane and one on 79 Street—would actually take the bus past my parents’ house, meaning it would then have to backtrack to bring my sister home. My father tried explaining this to Joanne, but we figured at least the bus was in Woodhaven and it wouldn’t be long until she arrived.

At 7:30 my father called the Interagency Transportation System (IATS), a state agency that oversees independent bus companies.  Rachel from IATS told us that the bus was heading to its next stop, and told her the address. “That’s in Glendale!” my mother cried. “They literally passed us right by! Now they’re going through to the other side of Forest Park? How much longer is this going to go on?”

8:00 rolled around and still no bus. Over the course of the next half hour we were given three more locations—Cypress Ave, Seneca Avenue and Grove Street, and 52^nd and Metropolitan—each further away from us than the last. My mother got back on the phone, and this time it was with Seth, the owner of Smart Pick. “You are not hanging up this phone until my daughter is home,” she informed him. At 8:43 the bus finally pulled up, and a visibly tired and hungry Christine got off the bus. She was the last one dropped off, a twenty-seven-year-old woman on the bus in complete darkness with the substitute driver and attendant, two unfamiliar people.

In total, Christine was on the bus for just about six hours. Within those six hours, she had nothing to eat or drink, no opportunity to use the restroom, and two missed medication sessions. If she needed or wanted any of those things no one knew because she is incapable of asking for them. Therefore, she got nothing.

This shocking ordeal is unfortunately just the tip of the iceberg when it comes to how desperately developmentally disabled adults need advocates. According to NYC Family Advocacy Information Resources, in New York State alone approximately 6,400 people with ID/DD are awaiting residential services. The state has also presented an intermediate care facility (ICF) closure plan that will eliminate up to 1600 residential opportunities.

Exactly where does the state think all these people are going to live? My parents have been Christine’s caretaker for the past twenty-seven years, and will happily continue to play that role for as long as they can. But as my parents get older, Christine deserves options that will keep all their minds at peace.

People say that once you’re a parent, your job isn’t done after eighteen years; it’s a lifelong commitment. That of course is true, but when you’re the parent of a person with a disability it is less a colloquialism and more an absolute reality. Even the simplest indulgence like going out to dinner, something two people in their sixties normally wouldn’t think twice about, requires planning: phone calls to make, favors to ask. The only time my parents go on vacation alone is the week in August my sister is at sleepaway camp. They cannot just pick up and do whatever they want.

Though it may seem like reason enough to some people, this is not why my parents are so concerned with the bleak future of residential care. They have no idea if they will be physically capable of taking care of Christine several years from now, and they want to make sure an appropriate living arrangement is available. They also believe that Christine should have the opportunity to interact and live amongst her peers, as the rest of us do. Thousands of others are in the same situation, and with baby boomers approaching elder age status, there is even more competition for space in residential care.

The dismal statistics regarding residential care and my sister’s bus nightmare only serve to illustrate the immense challenges faced by adults with disabilities. They are tantamount to a forgotten population, even more so than children with disabilities. We expect a child to need 24-hour care; we are confounded and passive when an adult needs it, expecting it to be someone else’s problem.  If an autistic child had been left on a school bus for six hours, the principal of the school responsible would be on the evening news. Why do we look the other way when trauma befalls an adult with a disability?

We can look the other way all we want, but the people in need of appropriate housing will still be there. It is time the state stops looking the other way and begins looking toward the future of adults with ID/DD.

On Wednesday my sister spent six hours confused, in the dark, and headed nowhere fast. She shouldn’t have to spend the rest of her life that way.