Fighting City Hall: Get Services for Your Special-Needs Child

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NYC Times Square Buddy Walk VideoA  friend is trying to help an immigrant family access services for a special-needs child. She asked me for ideas, so I called my neighbor who used to work within the special education system.

My neighbor’s tips were so helpful that I asked for permission to publish them.  She agreed and even suggested the title, “Fighting City Hall.” When you hear the stories about parents who threw chairs and threatened doctors with violence, it’s because the tactics work. I don’t recommend these tactics, nor does my neighbor. But it gives you an idea of the frustration that parents experience. Don’t expect it to be easy. And from what I hear this is not a problem unique to Israel.

Don’t give up—you can fight City Hall. Here are my neighbor’s suggestions.

  1. Set your goals. This can be hard when you feel overwhelmed, but it is a necessary step. Do you need a new evaluation, additional therapy, more help with day-to-day care, or financial assistance? Once you have a list, decide on your top three priorities and leave the rest for another time.
    If you feel that setting goals is over your head, try to find a good social worker. A social worker works either for the city or the health fund, and is most likely to know about available services and resources.
  2. Be prepared to fight. Never feel guilty or ashamed about asking for help for your special-needs child. After all, it’s not for your child alone—you are asking on behalf of all families with similar needs. Laws have been changed, and services increased, because of “pushy” parents like you.
  3. Know where to start. There are four places that provide services for children with special needs.  1) The child’s school. 2) Your health fund (kupat cholim). 3) National Insurance Institute (Bituach Leumi). 4) The iriyah (municipality i.e. City Hall).
  4. Aim for the top. In a school, start with the principal. In the health fund, ask for the head doctor in charge of services for special-needs children. In City Hall, ask for the head of psychological services.
  5. Use English. The higher up you go, the more likely you will encounter someone who at least understands English. It’s critical that your requests are understood.
  6. Don’t be afraid to waive your privacy. You will be asked to sign a waiver allowing documents to be transferred from one department to the other. I recently signed one for my sixth-grader, who does not have special needs, when we applied to junior high. It’s not giving anyone permission to enter your home in the middle of the night.
  7. Carry a file with several copies of relevant documents. This way you can avoid delay in getting services.
  8. This last tip is the most valuable. Learn the following key phrases and apply liberally:
    • “Dachuf (urgent).
    • “Thank you for your help so far. I still need more help.”
    • “Mah od?” Is there anything else? This is the most important. A city official once said to my contact, “You must be very good at your job. Most people don’t know what they are entitled to, so they don’t ask for it.”

Can you add any tips to the list?

Update: Here is a terrific blog called Shutaf, by Beth Steinberg and Miriam, parents of special needs children.

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Comments

  1. Depending on what the particular issues are there are often other resources available such as nongovernmental organizations that focus on a particular issue and therapeutic centers. These can be great resources for finding out what you are entitled to, getting help, and connecting with other parents who have faced similar situations. But they are usually concentrated in the large cities. Also, remember that what you are entitled to has nothing to do with what your child needs, it’s the result of a combination of legislation and bureaucracy. Some disorders are automatically given a lot more resources than others simply because parents fought for it in the past, raised awareness, and lobbied the government.

    One last thing: know when to look elsewhere. If your kid is in a school that is so difficult to work with then start looking elsewhere, and if possible leave your ideological baggage behind.

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  2. From what I hear from friends, Israel actually has more FREE services available–but of course as you point out, it is important to ask for them. Several friends with special needs kids had “sherut girls” serving as classroom aides. American friends of mine have paid someone $25,000 or more a year for this service.
    My mother worked in special ed and always told parents in the US and in Israel to go to the meetings as if they were going to a business meeting. Dress up and do your homework so that they will take you seriously. It’s clear that MII’s neighbor has done that and it’s a good tip.
    The other tip from my mom is to play by the school’s/authority’s rules even when you buck them. In other words, if they recommend an assessment by a professional, go to a professional (even if you plan on fighting them). You don’t want to be labeled the non-cooperative parent–but that doesn’t mean that you should do everything they say. You must always be your child’s advocate–but you want to make sure that you do it in a way that will be understood and that will be most beneficial to your child.

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  3. Jonathan Ross
    Twitter:
    says:

    A great post and I can honestly say we have experienced some of this. We had to go and find a different Developmental Pediatrician when the Kuppa Dr would or could not provide a diagnosis several years ago and subsequently have become very experienced in how the system works here.
    Jonathan Ross recently posted..Dio – It Looks Like Linden Labs Just Discovered First LifeMy Profile

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  4. We are in the beginning stages of trying to get services for our son. We are having to go through hitpatchut hayeled. Any advice on dealing with them? How about speeding up the time to get an appointment? We can’t even get an appointment to get evaluated by the doctor for another month, meanwhile, his gannenet is really struggling and wishing our son could have a shadow. Next year we hope he will be in a gan safati.

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    • Hi Olah mom, I will also your question on the Facebook page.
      Hannah Katsman recently posted..Fighting City Hall: Get Services for Your Special-Needs ChildMy Profile

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    • My son (he’ll be 6 in May) was recently diagnosed PDD-NOS. Feel free to e-mail me at yeshasettler at gmail dot com with any questions you may have and I can tell you the process I went through in getting my son evaluated, diagnosed and into special-ed and therapies.
      Devo K recently posted..Chinuch vs. Shalom BayitMy Profile

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    • It may be difficult to get a sayat in the middle of the year. If he is in private gan, you generally cannot so focus on what you need to do for next year and look for a private sayat. If he in municipal gan, then don’t wait for the evaluations to come in, try to schedule the va’da now and look for a sayat now anyway. A sayat is not a trained professional, but a minimum wage worker. The person the Iriya finds might be incompetent or a bad match for your son. see if you can find someone who is looking for part time work and pay them privately for a bit to see how it goes. If it works out you can bring them to the iriya who don’t have a supply of people waiting – especially in the middle of the year. If you can’t wait for the appointments consider paying for private evaluations – you may need one from a doctor and one from a developmental psychologist, and the latter is often not covered anyway.

      Do you feel comfortable telling us your son’s condition and where you live?

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      • karyn blass says:

        we found a sayaat thru word of mouth and thru janglo.we found girls who were either waiting to go into the army or ones that were recently released fromthe army and were trying to make money to go on a trip or to pay for uni.the sayaat(or aide) went with my son to the psychologist for a few sessions for traing so it would be clear what was needed.best money i spent.

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      • Adding to my original post.

        Our son is 3 years old. He had surgery to have tubes put in his ears a year ago (6 months before we made aliya) after determining that he was not hearing which had caused a regression in his speech. We went for speech therapy weekly before we left, although there was a debate between service providers that he may need additional therapies, they couldn’t determine if some of what they were seeing was a result of the lack of language. He is currently in a municiple maon because after one day at the gan trom chova it was readily apparent that he could not handle that structured environment — and he’s not potty trained. Since arriving, we’ve had another speech evaluation and a hearing test (they think he’s not hearing everything, but he’s ‘just’ within the range of ‘normal’)…now we are negotiating our way through hitpatchut hayeled with Maccabbee here in Rehovot. My husband and I met with the social worker last week and our son will meet her this week. We are really eager to see what the developmental psychologist has to say when we meet next month as every professional who has met him still suspects he may need some OT as well. I hear that you can go private, but at this point my husband is still without a full time job and I’m worried about the money (I work full time). Any tricks for getting these things covered quickly? We’d love to have a sayaat for our son, but quite frankly I don’t even feel I manage him well all the time. I think we really need some input from professional OT and speech therapists to make sure he’s getting the type of help he needs.

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        • It can be tough to get a language delay in a bilingual youngster taken seriously. They see a kid who wasn’t born here, or he’s hearing English in the home, so that’s their excuse for poor Hebrew, then since he’s Israeli, it makes sense that his English wouldn’t be perfect. You gotta trust your mommy instincts, set your priorities, and BE ISRAELI.
          Yosefa recently posted..Reusable Sandwich and Snack Bags TutorialMy Profile

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    • See if there is a social worker in the hospital with the hitpatchut hayeled (Childhood Development). We see Freeda in Schneider Hospital. We get a tofes-17 and make an appt like seeing a doctor. Sometimes the social worker can squeeze you in to see doctors if she’s convinced it’s urgent. But for every extra week you are waiting, please be comforted with the idea that your son’s condition is not obviously urgent or life threatening. I know, as his mother, it is very hard to see him struggle. But be grateful that his issues may be quite boring compared to what the specialist is seeing every day. You know you’re in trouble if your case is memorable.
      Yosefa recently posted..Reusable Sandwich and Snack Bags TutorialMy Profile

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  5. Not everyone can muster up the characteristics of highly assertive behavior. I know this to be the reason for failed aliya efforts and aliya efforts that never happened. I do advocacy for people sitting at my side when I confront stubborn officials. I’ve saved them money, grief and time. My biggest sorrow about the moral abyss in this county is that it takes a toll on feminine behavior and on a sense of respect for others. Genteel, refined conduct with government flunkeys is the road to friarism, sad to say. Israeli bureaucracy is an ego-maniac’s dream come true. It’s largely ruled by egos, not by a sense of compassion or by a sense of concern for the public welfare. Israelis need to remember that we are here because of H’ and that we are to live according to the laws of compassion He handed out to Avraham Avinu and at Sinai. Human Sacrifces R not Us. Chesed and yashrut are. Get it through your psyches, people.
    Yocheved Golani recently posted..Beat Back the Blues with 1 User-Friendly Tool!My Profile

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  6. A friend asked me to post this anonymously: When she realized how long it would take for an evaluation she arranged for private speech and occupational therapy. When she finally got services from the kupah, 9 long months later, she continued to supplement with private therapies. Her child, who was diagnosed as being on the autism spectrum, is now mainstreamed. She writes, “The money you shell out for intensive intervention earlier will save you money in the long run if you are one of the lucky ones.” No matter what she did, she could not get a faster evaluation.
    Hannah Katsman recently posted..Anti-Extremism Project Needs Your HelpMy Profile

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    • My experience is quite similar. Luckily for ASD BL provides full disability, which goes a long way to paying for private therapists. They will also pay retroactively to the time of the initial diagnosis – so paying privately for an eval a month or two earlier can be all or mostly offset by those payments.

      One last thing that no one mentioned – protexia can get you an earlier appointment. do you know someone who knows someone? Can your Private OT, PT, ST, pull some strings so you get a call if there is a last minute opening?

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    • karyn blass says:

      i was told that(after waiting 3 months for a speech evaluation) that my then non verbal 2 year old would have to wait another six months to get therapy from the kuppa…..i went privately.amazingly a slot opened up in the kuppa two weeks later–which we took.however we continued the private speech therapy as well….the therapists were coordinated with the therapy needed.when the kuppa stopped therapy after 15 sessions(or however many the maximum was before taking a three month break!!!!!!)we continued with the private therapist and never went back to the kuppa.

      the kuppa will reimburse for private OT,PT or ST but only if they have a particularly long wait….i tried to get reimbursement for private OT and was not successful because my son is in a gan safa and he is supposed to get all services there………no speech therapist there tho even tho it is a gan safa and the OT–who is terrific works with the kids in small groups and not individually……..of course i am only his mother and clearly don’t know what’s best for my kid.

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  7. rachel sabbah says:

    I’m an OT and a mom of a 2 year old who is currently going through all of the things mentioned above to find out why she experience her developmental delay:

    1- The kuppah can be your friend. Usually they refer out to “private” therapists who work both privately as well as accepting certain kupot, so the wait time for them is the same. You are given an ishur for 15 treatments, but then the therapist can request 15 more, unlimited amount of times, if she determines a need. If a break is suggested, it is not because of the kupah. Some kupot (meuchedet) offer unlimited treatment under the age of 9, i believe. Others quickly approve more sessions of 10 or 15, like macabbi.

    2- Call often to see if there are cancellations. There often are.

    3- The kuppah social worker is a great advocate, both within the kupah, and for dealing with the Iriyah, Bituach Leumi and whoever. She may not be able to go in and talk for you, but will use all her contacts that she can, and guide you very appropriately. In our experience, the social worker for our daughter heard our concerns, which at that point weren’t stressing us very much yet, and got us an appointment with the developmental pediatrician THE NEXT DAY.

    4- Use any and all contacts and friends you can think of. This country works on the principal of “protektzia” and we have gotten many tests and appointments moved up from a side remark to a random acquaintance.

    5- 1-3 months wait time is not a long time. If you were in the States, you might have a shorter wait time, but only if you were insured. If you weren’t, then you would be waiting much longer. In Canada where there is socialized health care, an appointment for an evaluation with an OT could take about a year of waiting. Most there wouldn’t even consider public, they would go straight for private, with a waiting list of 1-3 months, which is much much more expensive than the kupah here. It is frustrating to see your child with a true need for a service and have to wait. I understand. Do your best to move things up, get advice for what to do in the interim, and have faith that things will come together.

    Good luck to you all!

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  8. Thanks for posting this. Just today I received the letter that completes the pile of documents I need to go to the Ministry of Health to apply for a specialized walker for my daughter. In my experience, the therapists, teachers, and social worker at a special needs school can be excellent advocates and sources of information. It’s the children who, thank G-d, are not in need of a special school or special class who can fall through the cracks. Coordinating care and finding the right path through various referrals and authorizations to the appropriate therapies for a child who is in a regular class room can be a very overwhelming experience.

    As far as advice, I’ll just reflect what most people above said, “Be Israeli!” If you are being patient and it turns out the office lost you paper work, they’ll think you’re the “fryer” for not calling to check (again and again). Secretaries, doctors, etc. expect you to call, push, nag, etc. If you don’t, they think you’re being lazy and irresponsible, it’s not their fault for loosing your paperwork or forgetting to tell the doctor you’ve been waiting two hours!
    Yosefa recently posted..Reusable Sandwich and Snack Bags TutorialMy Profile

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    • There was recently an article about this by Rav Shai Peron, who has a very special needs child who he is integrating in a regular school, they spoke of the difficulty of getting required adjustments (e.g. a toilet suitable for a boy in a wheelchair!)

      He is now number 2 on the Yesh Atid list.
      I believe he can be an advocate for special needs children. If someone has problems getting help they need, I think it is a good idea to apply to him, I heard he helped people already (without any connection to the knesset)

      I also think that under the age of 3 child development treatments are unlimited (almost).

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  9. Thanks. I’ll try to remember that. So far my best resources besides the school social worker are other mothers. With a “very special needs child” it can often be easier to make connections – the need is obvious and not a secret. With other needs like mental illness or less obvious diseases, it can be a balancing act between making valuable connections and not “spreading the word” that your kid has an issue, which can impact their friendships now and their dating prospects later.

    When you mentioned age three, that reminded me of something else I learned – It’s harder to get qualified for social services for children under three. For example – compare a special needs one year old to your average one year old – can they dress themselves? use the bathroom on their own? feed themselves? walk? talk? If your child is blind or deaf, G-d forbid, it’s practically automatic, but it can be harder for more serious issues. Once a child “qualifies” they get a stipend from “betuach leumi” (national welfare). They must be re-evaluated every three years; but the stipend and range of services/discounts goes up after the three-year-old mark. The three year old is also evaluated by the ministry of education. Before three, special preschool is covered by the ministry of health.
    Yosefa recently posted..Food Rescue in IsraelMy Profile

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  10. The best tip I got when my son was born was to ALWAYS ASK FOR EVERYTHING I could think off. The number of times when I got a “yes”I didn’t think was possible is amazing.
    That, and always believe your kid can do more. People tend to underestimate what a special need kid can do and do less for /with him because it’s much easier. Don’t let them.!!

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  11. i don’t know anything about the situation in israel, but here it is very important to understand the laws and regulations inside and out.
    abba’s rantings recently posted..First 100 DaysMy Profile

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  12. Hi Hannah,
    Thanks for recommending our Shutaf blog. I would add a few comments to this excellent list of advice for parents of kids with special needs in Israel :
    1. Kesher – organization for parents of kids with special needs. They are an excellent source of information about govt’ services, rights, etc. Their main branch is in Jerusalem but there are other branches around the country. The jerusalem office number is: 02-624-8852 or 02- 623-6116. Unfortunately their website only has russian and arabic translations from the hebrew so it’s not usually an Anglo-friendly site. (here is the link to their very informative site if you can handle the hebrew: http://makom-m.cet.ac.il/pages/lib-home.asp. And here is a link to their parent forum in Hebrew: http://www.horimbekesher.co.il/ )
    2. I agree with one of the comments about looking into the non-profits that serve your child’s specific issue. This is also information you can get from Kesher.
    3. One important thing I thought was missing from the list was looking for parent support systems – either formal support groups or just other parents dealing with similar issues – people who have been through the process – both in the educational system and the health care system. This is invaluable as a source of information but also for emotional support.

    I’m the mom of a 17 year old girl with Down syndrome and without the free counseling I got in the early days (from Kesher – not sure they do this anymore, unfortunately), I would not have gotten through the early years.

    For anyone in the Jerusalem area with school age children, Shutaf will be having a pre-Pessach camp at the Jerusalem Nature Museum (transportation to and from camp). It’s during that week that you’re cleaning and can’t think of what to do with your kids – special needs and typical… I’m happy to answer any questions. You can come and visit our Thursday after school program to get a sense of who we are.

    Miriam

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    • Horim b’Kesher does have counseling for parents. I think they do it through therapists they have an agreement with. I wish I could find a counselor who would lead a siblings group. I would like to start a group in our area (Petach Tikva) for elementary school aged siblings of special needs kids.
      Yosefa recently posted..Focaccia HamentashenMy Profile

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  13. Kids do very well with mentors, also peer mentors. Parents are ultimately the main therapists so it is good to learn about ‘ working with ‘ therapies that focus on parents working with kids such as RDI – relationship development intervention and CPS – collaborative problem solving
    Allan Katz recently posted..Test scores or student Well BeingMy Profile

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