By Donald H. Harrison

PHOENIX, Ariz. -- There is a substantive array of Jewish activities and programs available in the greater Phoenix area for children and adults with disabilities. Likewise this community offers a variety of Jewish support groups for family members of persons with disabilities. Chances are none of this ever would have come to pass if  Becca Hornstein hadn't decided back in 1983 that she would not permit another Jewish community to act as if  her son, Joel  were " invisible."

Today, Hornstein is director of the Council for Jews With Special Needs, Inc., a trend-setting nonprofit agency in Phoenix that grew out of her determination to find a synagogue that would help Joel, who is autistic, become well enough educated as a Jew to have a full-fledged bar mitzvah.  

The Hornstein family had lived both in Indiana and Missouri before moving to Arizona.  Getting support for a child with autism to participate in the Jewish community was impossible, although the Hornstein's daughter Shana was able to fully participate in religious school and JCC camp despite her physical disabilities."

During an interview Tuesday, Feb. 28, at the Shalom House, where her son resides with two other Jewish adults with disabilities, Hornstein recalled the frustrating round of telephone calls she made over two decades ago to synagogues and agencies throughout the Phoenix area.

 
Becca Hornstein, founder of the Council for Jews with Special Needs in Phoenix, welcomes a visitor to the Shalom  
House where her son Joel lives with two other adults with disabilities.  Besides being living quarters, the great 
room of the home ( at right) serves as a meeting place for other Jews with disabilities.

"I asked, 'Do you have special education classes?’ No.   'Do you have support facilities for families which have a person with disabilities?'  No. ' Do you have a sign language interpreter at your services?' No. 'Large print prayer books?'  No.  

"I went through this list of basic accommodations, courtesies, sensitivities, awareness, and it was no, no, no and no except a couple of synagogues said they had handicapped parking spaces.  So I said, 'great so they can drive here but there is nothing to help them once they arrive.'  Very frustrating, and what upsets me and other people, was that my son wasn’t just a disabled Jew, he was an invisible Jew.  And that is a pretty harsh condemnation of a community."

Eventually, however, Hornstein spoke with Rabbi William Berk at Temple Chai, which, back then, was a small Reform congregation, but which today is the largest in the area--a success that Hornstein credits to the "large heart" of the congregation.

She said when she went to speak to Rabbi Berk she had a giant chip on her shoulder because she was so angry and frustrated over the community's insensitivity to people with disabilities and their families.  

Hornstein told Berk about her boy who was then just 9.  "I want him to have a Jewish education to the best of his ability, whatever he can learn, and I want him to have a bar mitzvah."  Why? the rabbi wanted to know.  "Because Joel is Jewish!" Hornstein responded. "He was raised by Jewish parents! He comes from a completely Jewish family--(with four) Jewish grandparents! He is descended from Levites, my maiden name is Levy!  

"But more importantly," Hornstein explained to the rabbi, "Joel is a person of value! He is a wonderful, sweet, charming, hard working, challenged individual who has overcome such difficulties of a child with autism! I just think he deserves the dignity and the respect of standing before family and friends when he is 13 , and if he can’t say it, then my husband and I will stand before family and friends and say 'isn’t he remarkable?'"

Obviously moved by this parent on fire, Rabbi Berk responded:  ‘Great answer! let’s do it!.’

"So I called the Reform movement’s main office in New York and I said, 'okay, I’ve got a congregation willing to do a special education class.  Tell me how I do it.  Who do I call? Who is doing this?' and in 1984 there was nobody doing it. They were very nice to me, and said, 'if you start something, will you share it with us?'  And so I actually started much  of the Reform movement’s programs and I continue to be on their committee on disabilities… 

"We started a class with just Joel for one year--the rabbi and me and Joel--and  because Joel was still making the transition from sign language to speaking out loud .. we just took him into the sanctuary and the rabbi would talk, and I would interpret to Joel in sign language and Joel started picking it up… At the end of the year, the rabbi said 'what do we do now?'  And I said, 'let us start a class, and if I can’t get help from anyone else in the country, we’ll just figure it out as we go. And my joke was like the old Mickey Rooney and Judy Garland movie – 'Hey,  kids, let’s put on a show in the barn….'  'Hey, rabbi , let’s create a class…'  and so we did."

They started with a Jewish special education  teacher and a teenage sign language interpreter.  The class started just with Joel but within a month's time, it grew to four.  The others were a child with Down's Syndrome, a child who was deaf, and a child with Prader-Willi Syndrome. 

"The next year we had 11 students, and now 20 years later, we have over 100 students who have disabilities at that congregation."

While Joel was studying for his bar mitzvah, Rabbi Berk introduced Hornstein to Joyce Berk, who is not a relative.  Her interest was persuading the Jewish Community Center to include children with disabilities in its summer camp programs. Together, and with help from others,  the two women accomplished this goal.  Next. they placed a notice in  The Jewish News of Greater Phoenix inviting to a community meeting anyone in the Jewish community with a child with disabilities, or interested in helping persons with disabilities.

Eighty seven people showed up for the meeting, and Hornstein and Berk asked them what kind of programs they might like.  The answers came quickly: "We would like support groups...We would like special education classes in different congregations...We want to continue the recreation program...We want to maintain a summer camp program."   Hornstein and Berk responded that they would work on all these requests.

The two women agreed upon a division of responsibilities--Hornstein, who had degrees in art and education, focused on programming, whereas Berk, who had lived in the community many more years than Hornstein, specialized in fundraising.  They persuaded the Jewish Community Center to list their program as one of its official projects. Later, the Jewish Federation became the sponsor of the project and later still, the program was independently incorporated as the non-profit Council for Jews with Special Needs.

* *

Hornstein recounted the origins of the Council to me while sitting in the "great room" of the Shalom House, which not only is used as a living room by her 32-year-old son  Joel and his two housemates, Jason Levy  and Kevin Cramin, both 37, but is also utilized as a meeting place by the Yad b' Yad Adult Group.  This group was created in 1988, the year after Joel made news by becoming "the first person in Arizona with a severe disability to have a full-fledged bar mitzvah," according to his proud mother.

"By that time he had enough speech and communication skills that he led the congregation in responsive reading  and had his Torah portion and blessings; it was the first full fledged bar mitzvah, instead of the token stand up there and say one blessing…." she said.

Perhaps people think first of children when they are creating programs for people with disabilities, but these children grow older and their needs change. The Yad b' Yad (hand in hand) program serves people "who have mild to moderate developmental, physical and sensory disabilities."  In the program, people with special needs socialize with "typical" adults "to enhance their Jewish identity through religious, cultural, educational and social programs," according to a description published by the Council.  

"On a Sunday afternoon once a month, the group holds the 'Adult Jewish Studies Class' in which a special education teacher leads discussions and activities about Jewish history, dietary laws, etc.  On another Sunday afternoon each month, the group gathers for social activities including holiday parties, bowling, miniature gold, dining out, art projects and more."

The home in a quiet suburban neighborhood in north Phoenix is staffed 24 hours a day, so that Joel, Jason and Kevin always have someone upon whom they could depend in the event of an emergency.  Two of the men have bedrooms adjoining a bathroom; the third has the master bedroom and a separate bathroom for which he pays a greater portion of the rent.  Money for the rent is provided to the men under Arizona's  programs for people with disabilities.  The Council pays for the programming at Shalom House, but the clients themselves pay the rent.  To avoid conflict of interest--in that her son is one of the clients--Hornstein  recuses herself from handling the Shalom House financial accounts..

"All three men are considered developmentally disabled which means that the combination of their cognitive ability and their intellectual capacity is limited and they don’t learn as quickly or learn to the maximum that a typical person would," Hornstein said.

"So, in other words, they have low IQs, except Joel who has this strangely high IQ but no common sense.  So Joel has gotten into cars with strangers; Joel has been beaten up, Joel has been robbed, and the other two have not because while they may have an IQ literally a third of Joel’s, they have common sense. And that is the confusion about developmental disabilities and mental retardation and autism: it is never one clear explanation, it is a mixed bag of strengths and weaknesses.  

"Kevin and Jason ride two buses (to closely supervised jobs respectively in construction site cleanup and a hospital laundry).  They transfer. My son can’t even ride a bus one way because if someone said 'hey kid, get off the bus with me,' he would get off and I don’t want to think what might happen. So there is an interesting blend of abilities and disabilities in each individual."

There also is an interesting chemistry among the three housemates.  Jason and Kevin tend to look after Joel, to protect him.  On the other hand, Joel is able to read, while they are not.  So he reads to them postcards, and other mail, and he also reads the assignments on the "chore board" in the kitchen that are posted for each of the residents.  Some typical rotating chores are taking out the trash, dusting , throwing out the garbage, doing the clothes, setting the table for Shabbat.

The bedrooms of Kevin and Joel are immaculate, whereas the disorder in Jason's bedroom typically causes Hornstein to shake her head in dismay.  In her son's bedroom, Hornstein showed me a scrapbook that included articles written about Joel as well as memorabilia from December 2, 2002, the day that the North Central Regional Branch of the Maricopa County Public Library declared as "Celebrate Joel Day" in appreciation for the work that he does as a book filing clerk.

"People have just come to care so deeply about him that they celebrate the fact that while he has disabilities he has remarkable abilities," Hornstein said, picking up an award, then putting it down again. "The library treasures him because as a person with autism, nothing distracts him .  He gets the work done, he doesn’t stop to chit chat, he doesn’t stop to look at the books, he doesn’t get bored.  He has been doing the same job for 11 years; nobody wants to sort and shelve books for 11 years, 5 days a week, 6 to 8 hours a week, but he does, and he does it so quickly that he shelves at a rate four times faster  than anybody else. He goes on his trip every year to California, and, when he came back, they had 28 carts of books to be shelved, because they couldn’t keep up the work with Joel absent."

Hornstein looked at the spot on the dresser where she had re-placed the award. The second her son returns to the room, she said, he'll probably notice the award is not in the exact same place as it was, and will move it an inch or two to the right or the left to restore the proper order.

The Council director is quite fond of Jason, whom her son considers an older brother and whom she refers to as "Mr. Personality." 

"Jason, I think, believes he is the mayor," Hornstein explained. "These boys go to the Jewish Community Center three times a week to work out at the gym.  When Jason walks in, he sees all these people who may not really know him , but he says, ‘Hi how are you? I saw you last week! Are you going to work on the tread mill? Nice to see you! How are you? How'ya doing?'  He sees doctors that he knows from the hospital, the rehab center, working out at the gym and he will yell out across the length of the hallway, ‘Oh, Dr.. Schwartz, hi, it’s me, Jason!" 

"He is charming; he is amiable, he is friendly," Hornstein added.  You can tell by my smile: Jason just makes me smile.  He is tremendously sweet; but he has really good common sense. He can’t make change out of coins, he can’t read; he can’t do math at all – absolutely can’t do it.  He can write his name and he is very proud of moments when he writes his name, but Jason’s charm and general amiability gets him far in this world, and I have a special place for Jason, because he really does take care of my son.  

"A few weeks ago all the guys went on a weekend outing with a chaperoned group called Recreational Horizons, they went on a weekend outing. I would never know what Joel did because he doesn’t have the communication skills to tell me what they did. If I were to say 'Joel, tell me what did you do,''  he could tell me what he ate at each meal.  If I say, What did you do besides eating?',  he can’t give me that because he can’t generate his thoughts into a sentence. But Jason will say, 'oh, he was so cute, we played the slot machines, he lost $1.50 in nickels, we went on a boat ride, and Joel lost his hat on a train ride,' and I wouldn’t have known that unless Jason were there.  So I am truly blessed with those two boys; they really are like brothers.  

"This house truly functions as a family.  Kevin and Jason get on each other’s nerves occasionally, Jason teases Joel sometimes until Joel says, ‘all done, get out of my room.’"

A home for adult women with disabilities is under consideration, as is a co-educational home, Hornstein said.

Knowing that there can be Jewish places like this for adult children with disabilities eases the fears of aging parents, who worry what will happen after they die, the Council director said.  Some years ago when she was diagnosed with cancer, she added, she felt how consuming such a worry can be.   

Joel's younger sister, Shana, will always be in Joel's life. In fact, as a result of her brother's autism, Shana became so interested in the field that she is about to begin a doctoral program in autism studies. She was accepted at more than one university, and, as of yesterday, Shana still hadn't announced her decision, her mother reported. 

* * *

What started with Jewish educational programs for children with disabilities, and grew to summer camp and youth group inclusion, later expanded with groups for adults with disabilities and for teens. Other programs are developed as needs are recognized.  "Grandparents Gathering," for example was started by Dr. Martin Keller, a psychologist, to bring together grandparents to swap stories and the concerns they have about their children raising grandchildren with disabilities.

Information referral, procurement of sign language interpreters for the deaf,  Braille books for the blind, are among a growing menu of programs that occupy the staff of the Council.  

Hornstein said what is unique about the Council is that it is a stand-alone agency which has as its sole mission the welfare of Jewish people with disabilities.

"In most communities, if they do it, the Bureau of Jewish Education takes care of special education, and in the same community, the Jewish Community Center takes care of recreation and Jewish Family Service might provide Jewish referral and information, and maybe the Jewish Federation will provide some money toward a house," she said.

"We are what somebody referred to as 'one-stop shopping' but the technical term is 'single point of entry'" she said.  Thus, when a family moves to Phoenix, they don't have to telephone here and there to learn  "where do they go to religious school, where do they go to camp, is there a group home, do you have a social activity and so on." Hornstein said. "I do most of the intake... and then I am going to help you find an appropriate place."  

Hornstein said having one place where families can go, "is so much kindler and gentler"  than forcing them to shlep from agency to agency and having them tell their stories seven or eight times. "I am not aware of another community where all the things that we do are under one roof," Hornstein said.

The chances are good that if there were another program like that elsewhere in the country Hornstein would have heard about it.  She maintains the national data base of program for Jews with disabilities--a data base that increases the number of people her agency helps from its 350 local clients to some multiple of that. The Council also maintains a website at www.cjsn.org.

As many as 17 to 20 percent of the people in the United States have disabilities of one type or another, Hornstein said.  The Council for Jews with Special Needs focuses specifically on Jews, rather than trying to reach out to the entire population, because board members believe it is better to remain small and do the job well, than to grow big and to overextend, she said.

A price is paid for that decision: because its services are restricted to Jews, the Council for Jews with Special Needs is ineligible not only for government grants but also for grants from some private foundations.

Nevertheless, the Council is able to raise its $280,000 annual budget through donations from individuals and other foundations "who don't mind that we're Jewish," as well as through the sale of jars of "honey for the holidays," and an off-beat yearly dance which inspires different dress-up ideas. One time, the dance had a jungle theme, and people wore animals; another time it had a French theme; and on yet another, the function was held at the Art Museum, with the Council's clients selling some of their art.