A Fulfilling Life¬†
By: Aviva werner
Published in Binah Magazine, November 3, 2014
Before she reached her first birthday, Temima*, now 25, was diagnosed with a neurological condition called cerebral hypotonia. Early intervention helped her learn to crawl and then walk, as well as improve her speech and language, despite the low muscle tone symptomatic of her condition. Her parents enrolled her in a top secular special-needs academy, as they couldn‚Äôt find an appropriate placement for their daughter in their local Jewish schools twenty years ago, even in New York. Private tutors filled in Temima‚Äôs Judaic subjects and programs like Chabad‚Äôs Friendship Circle, which pairs teens with special needs with typical friends, gave Temima a much-needed social life. She is a voracious reader and enjoys traveling, having been to Costa Rica and Mexico with kosher tour groups. Sruli*, 28, was born with Down Syndrome. He enjoys music, and plays the drums, guitar, and keyboard. He relishes singing zemiros at the Shabbos table, and looks forward to his weekly study session with a chavrusa from the community. To him, everyone he meets is his friend, and he loves his fellow Jew with no reservations. He especially loves children. Rivky*, 32, was born prematurely.¬†
Defining The Terms
The term special needs refers to people who need extra help ‚ÄĒ educational or otherwise ‚ÄĒ because of a physical, cognitive, or psychological disability. A developmental disability describes a chronic condition that causes someone to have difficulties, whether they are challenges communicating, getting around, learning, or living independently. Some common developmental disabilities include Down Syndrome, cerebral palsy, autism, and Asperger syndrome. Weighing in at 1 pound 12 ounces, it was a miracle that she survived at all, let alone with no physical handicaps. But her early entry into this world did leave her with developmental disabilities. She attended public school as a child, learning Yiddishkeit at home in the embrace of her warm and close-knit family. Today, she lives in a supportive apartment with two roommates, and speaks to her mother on the phone daily. She‚Äôs a wonderful cook and enjoys cross-stitching tablecloths.¬†
Transition to Adulthood
In many ways, life was simpler for Temima, Sruli, and Rivky when they were children. Their parents took care of them, they lived at home, and they went to state-funded schools. As they approached their early 20s, though, the transition to adulthood presented them and their families with new decisions to make. Whereas typical individuals in their early 20s generally prepare for jobs or careers and begin to build their own families, young adults with cognitive impairments have much less obvious futures to consider ‚ÄĒ namely, who will take care of them, where will they live, how will they lead fulfilling lives? Though they may not be college bound, they can be productive and find employment in line with their interests and abilities. Though they may not be able to live independently, they might consider living with other adults with developmental disabilities in supervised apartments. Though they may not approach shidduchim the same way their typical peers might, they can indeed consider marriage, though they will have to work harder than most to make it a possibility. ‚ÄúWhen you have a child with special needs,‚ÄĚ explains Temima‚Äôs mother, ‚Äúyou are forced to live in the moment; you can‚Äôt plan too far ahead. There‚Äôs a baruch Hashem yom yom kind of mentality. You are forced to be grateful for every milestone that is achieved.‚ÄĚ¬†
Supporting the Special Neshamos Among Us¬†
There are many agencies in our communities that make it their business to support those with special needs.With state funding in New York from OPWDD (New York‚Äôs Office for People With Developmental Disabilities), organizations including OHEL Bais Ezra, Yachad, Yedei Chesed, HASC, and others help these individuals and their families navigate their way through every stage of life. (Other states provide similar support through their own local agencies and service providers.) Day habilitation programs, for instance, provide a safe and enjoyable environment in which developmentally disabled adults can learn life skills.Vocational training programs prepare them for success in a work environment. Supported housing provides the opportunity for semi-independent living. Social activities pave the way for friendships, while dating skills groups prepare them for the possibility of marriage. The broad array of programs and resources available enhance the quality of life for the disabled adults among us, providing opportunities for growth and personal development, such as the chance to earn a paycheck. Often a single individual will receive services from more than one agency. Some people might, for example, get residential. services from one agency, get vocational training from another, and attend social events run by a third. Sometimes service agencies even work together, as when Yachad put together a job fair for candidates with disabilities. ‚ÄúThe more jobs that came from this job fair the better, regardless of which agency the individual came from,‚ÄĚ reflects Jack Gourdji, executive director of Yachad‚Äôs vocational services division.¬†
Entering the Workforce
Adults with special needs might bag groceries in a supermarket, sort mail in an office mailroom, or help bake mouthwatering desserts at your local restaurant. They work successfully in preschools, in clothing stores, and in pizza shops throughout our communities. With the proper training and oversight, developmentally disabled adults can and do master the skills necessary to be successful at work. Depending on the job and the individual, training might prepare someone to navigate public transportation in order to travel to the worksite, or help her craft a resum√© and practice answering questions at a mock interview. For some, ongoing support, such as regular supervision or on-site job coaching, is crucial to job success and satisfaction. For others, pre-vocational training may be all they need to succeed. Either way, developmentally disabled individuals can still receive government funding for housing and other areas of need while earning their own paychecks. Sruli works part time in a mail room with an enclave, a group of individuals with similar disabilities and skill sets who work together under supervision. ‚ÄúHe didn‚Äôt want to collect trash,‚ÄĚ his mother remembers. ‚ÄúHe has trouble with heat so a previous landscaping job didn‚Äôt work out. He wanted to work in an office.‚ÄĚ Rivky also works every day in an office setting, from 7:00 in the morning until 3:00 in the afternoon. Temima is still in the thick of her job search. She and her case workers are leaving no stone unturned in their efforts to find the right fit for her interests and abilities. A job coach at NYU/Rusk‚Äôs vocational program helped Temima put together a resum√©, pinpoint her abilities and interests, and apply for competitive employment. She already completed two unpaid internships, which honed her skills and introduced new skill sets. She tried an internship in the culinary arts, which made her realize that she couldn‚Äôt stand for long periods of time. At her second internship, she discovered that she enjoys and is good at filing papers. Temima is now interviewing for office jobs where she can do more filing. ‚ÄúI like things that are repetitive tasks,‚ÄĚ she explains, ‚Äúbut I need to improve my interview skills and being more assertive in person and on the phone.‚ÄĚ
We humans are social beings, and the disabled among us are no different.They need friendships and people with whom to connect and share.They want to have fun, learn, and grow. But making friends can be difficult, especially if the individual has a disability that affects communication skills. Sruli enjoys fishing. His mother tries to find people from the frum community to take him to his favorite lake. Someone once did take him out, and they had a great time together. Sruli‚Äôs mother was hopeful that a friendship might develop. ‚ÄúBut then the gentleman‚Äôs wife had a baby,‚ÄĚ she laments, ‚Äúand that was the end of that.‚ÄĚ Now her son goes fishing once a month with a companion from an agency. The companion also takes Sruli to museums and on other outings. Sruli‚Äôs own travel expenses as well as the cost of having a companion are government-funded, but the companion‚Äôs bus fare isn‚Äôt. Sruli pays for that with the money he earns in the mail room. In addition to his outings with the companion, Sruli also has fun playing his drums, guitar, and keyboard in a band with developmentally disabled friends and attending social events run by a local agency. Temima enjoys a very close relationship with her Rabbi‚Äôs daughters. She is friendly and fun to be with, and so a natural relationship developed with the girls in her shul community. Temima‚Äôs mother is very grateful for the friendship they have built. ‚ÄúTemima would go to the Rabbi‚Äôs house every Shabbos to hang out with them,‚ÄĚ she remembers. But now, though they are younger than her in years, the Rabbi‚Äôs daughters are already passing Temima in many ways. They are still great friends, but Temima‚Äôs mother wonders if the relationship might shift in the coming years. Living in a supportive apartment has given Rivky an instant social life. She lives with two roommates, who have become her closest friends.¬†
A Roof Over Their Heads
The decision about where a developmentally disabled adult should live is an important one, taking into account his or her capabilities, disabilities, and preferences, along with the opinions of parents and professionals. ‚ÄúWe really have to make sure that the individual‚Äôs very specific needs and aspirations are met by the right residential placement ‚ÄĒ a place individuals can call home, where they feel safe and can thrive,‚ÄĚ states Hindy Hecht, a director at OHEL Bais Ezra, an organization that supports developmentally disabled individuals from birth through adulthood. Depending on their level of need, developmentally disabled adults might live with their families or in government-funded supervised group homes. A residential group home or apartment has staffing based on the needs of the people who live in the apartment. Those needs might range from aroundthe- clock care for some to an hour or two a day for those who are more self-sufficient. Sruli lives at home with his aging mother and father, who worry about where their son will go when they can no longer care for him. They thought a group home would be the perfect place for Sruli, but he doesn‚Äôt want to leave his familiar surroundings. ‚ÄúPeople say you should just make him go,‚ÄĚ says his mom. ‚ÄúThey say he‚Äôll be happy and have friends.‚ÄĚ But considering that he has a good job and a comfortable daily routine at the moment, his mother just isn‚Äôt sure that a move against his will would be the best choice. Temima currently lives at home, although she has successfully lived away from home in the past. In fact, she spent a special year in seminary in Israel. Her mother found a small seminary willing to work with her unique situation and provide her with the opportunity to be in a seminary like everybody else. Temima has also traveled internationally with kosher tour groups. As long as she is with an organized program,Temima is able to take care of her personal needs, such as laundry and food preparation. When Rivky finished school, things were going well for her at her job, but something was missing in her Yiddishkeit and social life. ‚ÄúWhen my second niece was born in New York,‚ÄĚ she says, ‚ÄúI asked myself what I‚Äôm doing here out of town. I really wanted to move to New York and be near them.‚ÄĚ But she needed support in order to live independently, and her mother didn‚Äôt think it wise to rely on Rivky‚Äôs married siblings. After a year and nine months on a waiting list, Rivky finally moved into one of OHEL Bais Ezra‚Äôs supportive apartments, 12 years ago.
Building a Bayis Ne‚Äôeman B‚ÄôYisrael¬†
Just as typical young adults seek emotional closeness with a spouse, adults with special needs also feel a need for closeness and affection. And a disability doesn‚Äôt necessarily disqualify them from dating and marriage. Of course, not every person that has a developmental disability can marry, but many developmentally disabled adults can and do. However, there are major hurdles with two developmentally disabled adults getting married, in terms of their services and benefits.Whereas if each spouse needed one therapist before marriage, the general rule of thumb holds that after marriage the couple will need three. A number of Jewish agencies have dating and marriage programs to develop the necessary social skills and coach men and women through the process. These social skills groups prepare people to go on a date, show affection, and build trust in a relationship. When someone challenged by a developmental disability is ready for that stage of life, he or she will enroll in a dating program, ‚Äúa decision,‚ÄĚ explains OHEL‚Äôs Derek Saker, ‚Äúthat is a combination of the effort of the individual, the family, and professionals.‚ÄĚ Sruli has told his social worker that he isn‚Äôt interested in dating.Though he is 28 years old, he says he isn‚Äôt old enough for marriage. His parents respect his decision, especially considering that marriage would complicate Sruli‚Äôs benefits and bring another person with challenges into the picture. ‚ÄúWe certainly won‚Äôt push him,‚ÄĚ declares his mother. Temima‚Äôs mother, on the other hand, is optimistic that her daughter will indeed marry someday. Although Temima won‚Äôt be a ‚Äútextbook balabusta,‚ÄĚ still, with help from her mother or a caregiver, she will make a very special partner and build a bayis ne‚Äôeman. ‚ÄúI pray to Hashem,‚ÄĚ shares her mother. ‚ÄúI say, ‚ÄėHashem, for every pot there‚Äôs a lid.You gave me this child. If she is meant to get married and have a partner, then You‚Äôre going to bring the shidduch for her.‚Äô Halevai that she should get married, even if it‚Äôs with my guidance.‚ÄĚ Rivky‚Äôs mother is very cautious when a shidduch is suggested for her daughter. She believes that open communication with the boy‚Äôs parents is extra important in a special-needs match because, as she points out, ‚Äúthey‚Äôre not being relieved of the burden of a son with challenges, they‚Äôre getting a daughter-in-law with challenges as well. It‚Äôs a little bit more complex.‚ÄĚ¬†
A Neighbor‚Äôs Perspective¬†
Menashe* and Esther* are a married developmentally disabled couple with no living parents. He stocks shelves in a grocery store and she works in an office. They both get up early each morning to take their separate buses to their jobs. They take care of themselves for the most part, preparing their own meals and tending to their apartment, but they do have support from an agency for the tasks that fall outside of their capabilities. Yet Menashe and Esther‚Äôs neighbors are concerned that the couple is not getting as much support as they require. For example, from Sunday morning on, the couple is busy making Shabbos plans. One neighbor reports that after agreeing to host them for a meal, Menashe will call again throughout the week, reminding her repeatedly that they are coming. ‚ÄúIf someone from the agency would be on top of the situation and organize a rotating schedule of Shabbos hosts,‚ÄĚ the neighbor suggests, ‚Äúthey would have a much easier time.‚ÄĚ Instead, they go back to the same core group of families and expend way too much energy confirming their own plans. Menashe and Esther are also challenged in social skills. They take over the Shabbos table conversation and expect a lot of attention. They say and do things that are socially inappropriate. ‚ÄúNone of these things are a problem on their own,‚ÄĚ acknowledges the neighbor, ‚Äúbut when you‚Äôre sitting at a Shabbos table for an hour, you get worn out by the litany of comments, tips, suggestions, and directions.‚ÄĚ With better supervision, perhaps the couple could improve their social skills, or even experience a Shabbos meal in their own apartment.¬†
What Can the Community Do?
‚ÄúA community raised on the importance of chessed should look for ways to include people with special needs in all areas of communal life,‚ÄĚ urges Yedei Chesed‚Äôs director, Gershon Sabol. He recommends inviting special-needs individuals for a Shabbos meal and greeting them in shul, both gestures that Sruli‚Äôs mother desperately wishes were more common in her community. Sruli‚Äôs mother wishes that the community would reach out to her son as the adult that he is. ‚ÄúHe‚Äôs seen as an extension of us,‚ÄĚ she explains, ‚Äúand because he looks happy, other people don‚Äôt see that he needs anything.‚ÄĚ But, she explains, her son really needs more attention from the community to prevent his isolation ‚ÄĒ especially Shabbos and Yom Tov invitations without his parents, and someone to invite him along on those fishing outings. Temima‚Äôs mother feels tremendous hakaras hatov to the many people in her daughter‚Äôs life who did include her and welcomed her into their own lives with open arms. From the Rabbi‚Äôs daughters who befriended her to the menahel of a seminary that accepted her despite her disability, many people were able to look beyond Temima‚Äôs limitations to see her as the unique and capable person she is. Rivky‚Äôs mother, who lives far from her developmentally disabled daughter, is grateful for the wonderful people who make up her daughter‚Äôs day-to-day support network. They include the agency staff who enable her daughter to live an independent life, Rivky‚Äôs employers who treat her with respect and show appreciation for her contributions to the office, her roommates who are her best friends, and her local family members who include her in their lives. OHEL‚Äôs Saker explains that in order for a person with a developmental disability to achieve his or her greatest potential, there needs to be a combination of professional help, a supportive family, and an accepting community. The latter ‚ÄĒ a community that embraces and includes individuals with a disability ‚ÄĒ is critical to enabling an individual with special needs to thrive.
Special thanks to Derek Saker and Hindy Hecht of OHEL, Jack Gourdji of Yachad, and Gershon Sabol of Yedei Chesed for their help with this article. * Names have been changed to protect privacy