After that earth shattering moment when my husband dared bring up the idea of thinking about placing Dovi, my innocence was destroyed forever. While I successfully put it out of my mind for the next year, the very knowledge that Dovi was living in our home on borrowed time and his path to the future was living in a facility simmered constantly on the back burner.
I had known, of course, that unless a miracle occurred and Dovi would be fully 'cured', or at the very least, toilet trained, relatively manageable, and verbal, it was his inevitable fate. But in my mind, it was far, far off into the future. There was no point WHATSOEVER on dwelling on it when Dovi was 2, 3, 4 years old.
But once I joined the support groups, right from the start I realized that the favoried topics of discussion in the group were respite programs, camps, and long-term placements. I was horrified. I had come there to find more info about programs that would "cure" Dovi, not ideas that would permanently label him a disabled person who needed tons of personal care.
Obviously, the women in the support group who were talking 'placement' had children way older than Dovi. Their kids were in their teens and low 20s -- with some preteens in the mix. Certainly they weren't 2 or 3 years old. And they were worried; residential care facilities were few, and waiting lists were long.
I largely tuned them out. One day, down the line, the info would come in handy. Not right now. Now I needed information about school. And camp. And home health aides. And yes, respite options. Not long-term care.
But after that pivotal conversation with my husband, I began keeping my eyes and ears wider open than before.
The stark truth, however, was pretty abysmal.
Dozens of years ago, the only option for children like Dovi was the infamous, horrific Willowbrook State School and similar horrible places. When I started watching the Geraldo Rivera expose on Willowbrook I could not get past the first two minutes. It is that horrific. How the world could allow human beings to be treated like animals, like objects, is beyond me. After Willowbrook was exposed, the state started closing all the state schools and developmental centers, and gave the care and decision making back to families. Small, community-based group homes were formed, and the occupants of the state facilities were eased into these group homes.
Slowly, organizations began forming within the Jewish community as well, and group homes were built. First on the scene was Womens League, followed by Mishkon, HASC, Ohel, and Pesach Tikvah. Once the teens and adults were safely placed in new group homes, the OMRDD (Office of Mental Retardation and Developmental Disabilities), which was renamed OPWDD several years ago with the advent of political correctness, began encouraging people to keep their disabled children at home. No longer did babies with Down Syndrome, Cerebral Palsy, Spina bifida, or older kids who were deemed 'mentally retarded' but were probably autistic, globally delayed, or otherwise developmentally disabled, cast off and institutionalized. The new modus operandi was to provide a ton of support and assistance to the families, which was a lot cheaper than building more expensive group homes. Thus, the emergence of com-hab -- then known as Residential Habilitation - and Respite services turned into a wildly popular avenue for people who had an affinity for the special needs population. It became a building step for those who wanted careers in special ed. Schools for children with special needs opened up, and it became a badge of prestige for a post-seminary student to get a degree in special ed or related therapies. Suddenly, these children were no longer 'closet children' and were integrated, mainstreamed, or given the best education possible to reach their highest potential.
But...there were still disabled children who needed a home. Kids with disabilities and medical complications were still being born, and not every family could handle it. Sometimes their medical needs or disabilities were overwhelming and very disruptive to the rest of the family. Placing a child in this new era of inclusion and acceptance became a heartbreaking choice, instead of a given.
Beautiful, caring facilities for medically compromised or multiply disabled children exist around New York. There is Elizabeth Seton in Yonkers, St. Mary's on Long Island, and Sunshine in Westchester. There are few others further north in upstate New York as well.
For religious Jewish families, placing a child in a facility that does not offer Jewish services like kosher food and celebrating Shabbos and holidays posed a huge dilemma. Obviously, if a child needs care, if the family is falling apart, and a Jewish placement is not available, it is permissible to place a child in any loving facility. It is, however, a very difficult concession to make.
Several years ago, Sunshine was purchased by a religious family from Monroe, NY, and they made it multi-cultural and accommodating of every family's religious preference. This way, the Jewish children get kosher food, have holidays celebrated and Shabbos accommodations provided for families, and it has become a very sought after facility for Jewish families. Other facilities further upstate are accommodating of kosher food for their residents -- I am not naming names because those will figure later in the story and I'd rather not say their names right now.
In Jewish communities in upstate New York, new Medicaid Service Coordination organizations started sprouting up as well, such as Yedei Chesed; and the crown jewel of respite services, Hamaspik. They grew so big they eventually expanded into Rockland County and even Brooklyn, building beautiful group homes in each location. Last to come on the scene with group homes were Human Care Services and Rayim. (Forgive me if I accidentally left anyone out. There are dozens of wonderful Medicad Services Coordination organizations, but these are the ones I am aware of operating Jewish group homes in New York. If I omitted anyone, please let me know.)
You would think that with a plethora of group homes run by frum agencies, there wouldn't be a shortage of beds for the special needs population. I discovered two stark truths: There were absolutely no vacancies anywhere; and the agencies are kind of selective whom they accept into their facilities. Children with severe behavior issues, like Dovi, Zevi, Josh, and others, are not first choice. They are simply not equipped to handle them.
The women in my support groups were urging everyone to place their kid on every waiting list possible, and to call every month. Make yourself be heard. Make yourself be known. Eventually, you will get somewhere.
The only question is, will the family still be sane by the time their child gets accepted somewhere.
I can cite story after heartbreaking story of families that were hanging on by their last, unraveling thread of sanity. There were holes in the walls. The child was sleeping in a locked bedroom or a zippered tent - like Dovi - for his or her own safety. The child would smear his or her diapers on the wall. The child would be up for hours at night. The child could never be left alone, for a minute. The families were teetering on the brink of insanity.
But they were still sitting on a waiting list.
Against my own wisdom an instict I am ending this blog entry here, because I realized that the rest of this entry will be twice as long as the part you have already read, and I don't know how long your attention span is. In addition, I might not be able to finish the entire story tonight, and then I'll be pressured to do it tomorrow, when I have other things to do. So, consider this part 1, the introduction, to a very climactic incident that took place on June 13, 3 weeks before Dovi went to camp. If I will still get to write Part 2 tonight, I will post it in the morning, so that the 2 entries get sent to the email inboxes of the subscribers to this blog on 2 separate days.