According to the U.S. Census Bureau, approximately 56.7 million people (18.7 percent of the 303.9 million in the civilian noninstitutionalized population) had a disability in 2010. About 38.3 million people (12.6 percent) had a severe disability. About 12.3 million people aged 6 years and older (4.4 percent) needed assistance with one or more activities of daily living (ADLs) or instrumental activities of daily living (IADLs). A recent poll conducted by RespectAbilityUSA and Jerusalem U looked at the issue of inclusion in the Jewish community and found that of those who answered the survey, most supported inclusion of those with special needs in the community but that there is a disconnect between call and action. While the desire for inclusion is expressed, actual inclusion is still lacking.
The following is the first in a series of profiles of special needs. Each profile will highlight the resources that work and the resources still in need within the Greater Washington area Jewish community. We begin with Lotte.
Lotte was a little girl in 1939 when her family fled from Germany to the U.S. Born with challenges, she was high functioning enough to pass through immigration. Her cousin, a young boy, was not as lucky. His challenges were more profound and fearing for the safety of their other children, his family left him in an institution when they traveled to America. He was ultimately killed by the Nazis.
These were the days when children were either institutionalized or kept at home. Lotte was kept at home. Her mother’s plan was to keep her by her side and when it was time for her mother to enter the Hebrew Home, Lotte would join her — to spend her remaining 50 years in a senior home. (While this seems archaic now, according to Jennifer Laszlo Mizrachi, CEO and president of RespectAbility, there are approximately 400,000 people today who are not seniors but who have a disability and live in a senior home.)
Lotte’s cousins came to her rescue and convinced her mother to allow her to join a group home. The Jewish Foundation of Group Homes was in its infancy. When they told Lotte she would be moving to a home, she got up from the table, went into her room and shut the door. The family didn’t know what was going on. Was she upset? When they opened her door, they saw Lotte packing her suitcase. She was ready to move.
In order for Lotte to be accepted into a group home, she needed to develop social skills and daily living skills so she could live in a group environment. She also needed to get vocational skills, so that she could work during the day. The rules of the group home required the residents to either be in an educational or vocational environment during the day and return to the home at night. Her mother, typical of the time, infantilized her daughter. A child of Europe, she knew how to read and speak four languages, but not how to handle money or cook or take care of basic daily tasks. A caseworker was assigned to prepare Lotte. In her 50s, she became one of the first residents of the Cohen House.
According to her cousins, Rabbi Jacob and Marci Harris Blumenthal, Lotte blossomed at JFGH. She discovered she loved to paint and cook. “She makes her own decisions. She’s 85. If she wants another piece of cake, she gets another piece of cake,” said Rabbi Blumenthal with a laugh. And rather than be treated like a child, she’s the matriarch of her group home family. “They all call her ‘Momma Lotte.’ When we see Lotte, she’s part of our family, we see her in a certain way. We see her limitations,” he continued. “But they don’t see her as someone with limitations.”
The Blumenthals believe this is the centerpiece of JFGH — empowering the individual. And everyone, no matter his or her abilities, can continue to grow and develop and be a valued member of the community.
When she was younger, Lotte had a job with the Arc Montgomery County doing simple tasks — stuffing envelopes, assembling packages. Now she’s “retired” and enjoys day trips to parks, cultural programs and senior lunch programs, all with counsellors and also run by Arc. The rabbi remembers sitting through the annual meeting with Lotte years ago to discuss her plan for the year. “It used to make her uncomfortable. But now she sits through the meetings and tells us what she likes and doesn’t like. And she will make those decisions. She’s developed. She’s grown. You forget people with disabilities have the potential to grow.”
And Lotte has been a blessing to their family. Their son Jory, 16, volunteers with Matan, a Sunday school program at Shaare Torah where Blumenthal serves as rabbi. “Lotte is part of the family,” explains Marci Blumenthal. “Being around other children and adults with disabilities isn’t uncomfortable for them [Blumenthal’s children]. They see the value. They don’t see disabilities first.”
Vivian Bass, JFGH’s CEO, explains that the resident’s entire family becomes part of the extended JFGH family, “We really support the greater entity. That’s critical.” Currently, JFGH supports more than 200 individuals in some 70 sites in the D.C. metropolitan area. This Tuesday evening, the organization will host its 30th gala celebration.
According to Bass, now that disabilities are identified much earlier, families are becoming engaged as advocates much earlier on. Now, people with disabilities are living much longer and there need to be inclusion programs that support them throughout life. “We have a continuum of care within our Jewish community,” she explains. “Other communities may have one piece, but we have the continuum.”
The Blumenthals note that JFGH has made the commitment to be with Lotte for life — her home will support her as her physical needs change. And when she fell, JFGH supported her during her stay at a rehabilitation facility. When she returned to the Cohen Home but was restricted in her physical activities, they made provisions for a caregiver to be with her until she could go back to work.
Both Bass and the Blumenthals believe more funds are needed to help them do more. “Our weakness is we make JFGH look so good and so strong,” admitted Bass. JFGH offers a variety of housing options and levels of independence and care. But with limited space, families will accept an available spot even if that placement is not ideal. “It’s like college,” she explained. “You may apply to the agriculture school to get into the school knowing that once you’re on campus, you’re there. They’ll know if another home opens up that fits better.”
In addition to money, there needs to be an attitudinal change. Said Rabbi Blumenthal, “There needs to be a greater willingness of the community to invest in the dignity of every person and the ability for every person to reach their potential — the potential to be housemates, to work, to do art, to be Momma Lotte. All these things were inside of her, but it took years. Just like all of us, we all have potential and it’s powerful to see that.”