For Down Syndrome Adults, an Uncertain Future

Sixteen weeks into her third pregnancy, Lourdes Rivera-Putz’s gynecologist alerted her to a situation that, she would soon learn, would change the course of her life.

After a prenatal examination, the gynecologist called her up and said there was an unusually high level of alpha-fetoprotein in her blood, and went on to explain the significance of the anomaly: it could be a harmless temporary surge that would subside later. Or it could also indicate an increased likelihood that the fetus had chromosomal problems, such as Down syndrome, which would limit the child’s physical and mental development.

The gynecologist recommended that Rivera-Putz go through amniocentesis, a test that would give a clearer indication of the presence of any health issues. But the invasive procedure, which involves inserting a needle into the uterus, has been known to lead to miscarriage or injury to the fetus in some cases. “I was determined to have this child no matter what,” Rivera-Putz says. So she declined the test, and waited for the birth of her child.

Five months later, she gave birth to a boy, whom she and her husband, Frank Putz, named Jonathan. The elevated alpha-fetoprotein was a harbinger – Jonathan was diagnosed with Down syndrome.

“I suspected that Jon would be born with a disability,” she says. “It didn’t come as a surprise to me, but it was quite scary.”

Twenty-five years on, Jonathan has grown into a healthy adult who survived a chronic asthma, and surgeries for a congenital heart defect and an undeveloped ear canal. The genial young man greets people with smiles so wide that his eyes disappear into two dark crescents. Despite the Down syndrome, Jonathan lives a life similar to those without his handicap.

“I like girls,” Jonathan says sheepishly. He even tells his mother about the attractive girls he saw earlier on the subway. “But I am a little shy.”

He likes to draw too, and goes to the School of Visual Arts for art lessons every week. Jonathan may come across as a man of few words, but Rivera-Putz says that he is most comfortable expressing himself through his illustrations rather than through words. He most enjoys drawing The Muppets, especially Kermit the Frog.

“Muppets are my favorites,” he says. “They make me smile.”

Jonathan can be witty in conversation. Asked about his dreams, he says he wants to be a firefighter or policeman. The answer catches his mother by surprise.
“I have never heard of that before!” she exclaims. “I thought you always wanted to be an artist?”

“I am an artist,” Jonathan replied with confidence, stressing the word “am.”

Jonathan’s transition into adulthood has been smooth. He is especially fortunate in that his mother is the executive director of United We Stand of New York, a community resource center she founded in 1990 after feeling both frustrated and helpless by the lack of assistance to families with disabled children. She and Jonathan are both scheduled to speak at the upcoming Alliance for Full Participation Summit 2011 about how people with disabilities can be meaningful members of their communities.

He may be optimistic and hopeful about his future, but Jonathan’s family quietly worries about another transition – the one that will take place as he, and they, grow older. “Jon has no cognitive skills to look after himself and survive on his own,” says Rivera-Putz, who is 56 years old. “What will happen to him when I am no longer there?”

Jonathan is not alone in facing aging with limited options and few resources. Rivera-Putz’s worry for his future echoes the fears of other parents in similar situations, and reflects a growing need to provide for a population of adults who a generation ago died young.

Down syndrome, characterized by an extra copy of chromosome 21 in the individual’s genetic makeup, is the most common genetic birth defect, affecting approximately one in every 691 babies. In the past, most people with Down syndrome died at an early age, often from complications arising from congenital heart defects, respiratory problems and weak immune systems, all common in people with Down syndrome. In 1983, the life expectancy of Americans with Down syndrome was 25 years, according to statistics provided by the National Down Syndrome Society.

But now, with increased awareness and improvements in medical and healthcare services, the average life expectancy of the Down syndrome population has risen to about 60 years. The growing number of people with Down syndrome surviving beyond adolescence and well into adulthood and old age is posing a new and greater challenge to parents and healthcare service providers.

There are more than 400,000 people with Down syndrome in the United States, according to the Down Syndrome Society. But no statistics are available on the proportion of the Down syndrome population that is aging, or on how quickly that segment is rising. Data on this segment of the Down syndrome population is scarce. Yet the issue of providing care for the adult and aging population of people with Down syndrome is gaining more attention among advocates. They are seeking more federal funding to address questions of where people like Jonathan will be, and who will take care of them when their parents are too old and frail, or when they have died.

In many cases, people with developmental disabilities are institutionalized in adult homes when their parents or guardians can no longer look after them. But accounts of abuse and negligence of developmentally disabled residents have generated deep distrust and ambivalence among parents. Rivera-Putz is also worried that these residential facilities, usually located in relatively remote areas, are reversing the very thing that schools and organizations have been striving to achieve: integrating developmentally disabled people into society. It also further risks isolating the disabled from those they love, and who love them.

“Very often, you wind up uprooting them from the environment that they grew up in, not by their own choice, but because other options are not available for them, and that is not fair,” Rivera-Putz says.

Alternatives such as adult foster care have limited spaces and frustratingly long waiting lists, Rivera-Putz adds. Even if the disabled do get a place in these communal apartments, there is no assurance of permanent residence. Highly disabled residents who are unable to take care of themselves and who become and inconvenience to others will be asked to leave and seek accommodations elsewhere.

With five siblings and a mother well acquainted with the resources available to people with Down syndrome, Jonathan is more fortunate than many others. “We have talked about this as a family,” Rivera-Putz says. “His older brother, a certified public accountant, has agreed to manage his finances in the future.” His sister, Amanda Haught, who also works at United We Stand of New York, has also promised to monitor his situation, and make sure his basic needs are met.

Ideally, Rivera-Putz and her husband would like to buy an apartment for Jonathan to spend the later half of his life, and also employ an attendant to take care of his basic needs. “We are still trying to figure out how to achieve this,” she says.

But for many others with Down syndrome, this is rarely the case.

“What about those without any sibling?” asks Rivera-Putz. “If I am already finding it so hard to prepare for Jon’s future, can you imagine how much more difficult this is for other parents?”

Jonathan’s long-term quality of life remains as a big question. But he is already running into a more pressing problem at his part-time job. He works as an assistant bookseller at Cobble Hill’s Book Court every Tuesday and Thursday, where he packs merchandise and arranges books. For this, he earns $40 a week, or $160 a month. At the same time, he also receives $430 in Supplementary Social Income (SSI) for his disability, but it comes with a proviso: his monthly income cannot exceed $85. Even after excluding the first $20 of his income, which is not taken into account in the calculation, Jonathan’s salary is still $55 more than the stipulated limit. To receive Medicaid services he requires, which in his case, is a home attendant, he has to give up the $55.

“We are still paying the $55 because we need the home attendant to do the chores and make sure that he has his meals,” says Rivera-Putz (the irregular and busy work schedules of both Rivera-Putz and her policeman husband mean that they cannot tend to Jonathan all the time).  But this also means that when his parents are no longer around to support him, Jonathan will have to fork out the $55 from his own pocket, and struggle to live with the paltry sum for the rest of his life (he will receive a larger SSI payment when he is no longer living with his parents, but an income ceiling remains).

“Jonathan wants to be a productive member of society,” Rivera-Putz says. “Yet at the same time, he is being penalized for working.”

As understanding of Down syndrome increases, Rivera-Putz says, a growing number of parents are worrying about the future when their children are still young. Many of them walk into her office when their children are only five or six years old. Some have even told her that they would rather their disabled children die before they do.

“Parents are very afraid,” she says. “They really don’t think there is anything out there, and they are afraid that no one is going to take care of their child with disability like they would.”