Sick baby and making Aliyah?

amother

Saddlebrown

Tue, May 17 2016, 1:07 pm

Hi Everyone! I post sometimes but Im going ANON for different reasons....Im hoping all you imamothers can help.
I am strongly considering aliyah and I would like to know what services are available for special needs children. My son is almost 2 and he has an intense seizure disorder along with a RARE genetic diagnosis and probably autism. We all see it but he's a drop too young to be diagnosed officially. He receives around 5 therapies 5x a week and is considered a disabled person and qualifies for respite. I am the bracha to be working with an AMAZING early intervention team as well as the top neurologist in the country.

my question is as follows..

what type of early intervention does Israel offer? How do you feel about the health care being offered there? What other services, programs etc does Israel offer to individuals with special needs??

any information is very much appreciated!!!!

WastingTime

Tue, May 17 2016, 1:54 pm

1 Hashem should give you lots of stregnth!
2 there are many therapies covered by kupot cholim but I would say why not contact nefesh bnefesh for more specific info. They can probably guide you a bit as sometimes there is a bit of a maze in the bureaucracy here and you need to know exactly who to speak with about what.

I have been happy with PT OT speech etc that my kids have gotten. I have a friend who is very happy with her son's special needs school in JLM (I think it's called Meshi)
Side point:
In RBS they happen to have an amazing organization that has programming for special needs kids, after school, every Shabbos afternoon, summer break. Huge lifesaver for many
You may want to take it into consideration when deciding where to live.

dats me

Tue, May 17 2016, 3:33 pm

Please pm me if your child has TS. I live in Israel and have a child with ts and would be happy to share the name of our Dr here, who we are happy with. If I'm wrong then just ignore.

amother

Yellow

Tue, May 17 2016, 3:34 pm

My 3 year old daughter has a rare genetic disorder, we live in Jerusalem. I've been mostly happy with the services In Jerusalem using Maccabi as our health insurance. So this is long, but contains a lot of info.

The thing is, the level of care and the amount of services you can get sometimes depends on which health insurance you have and where you live. In Jerusalem, Maccabi health insurance is far superior to the other health insurances (Meuhedet, Clalit, Leumit). In other places it might be different. I strongly recommend living in a city though - we wanted to move out of Jerusalem to a nearby yishuv, but I realized that I would have to bring my daughter into Jerusalem at least once a week (and often more) for therapies, tests, doctor's appointments, anything that has to be done in a hospital (Jerusalem has many!), etc. It just wasn't worth it. We stayed in Jerusalem and it takes us only 15 minutes by public transportation to get to almost everything she needs on a regular basis (e.g. 15 minutes to PT, have the appt, 15 minutes back to bring her to daycare, etc., and I can still get to work at a reasonable hour).

Services for young children are done through Hitpatchut Hayeled (Child Development Centers), which are run by the individual health insurance providers. The Maccabi one in Jerusalem is great - covers PT, OT, and speech. Sometimes there can be a long wait for processing or for evaluations (done by a pediatric neurologist and often an OT, PT, speech specialist, etc.). But, Maccabi has never limited the amount of appointments or evaluations we get, which I've heard has been a problem in Jerusalem with other health insurance providers (I've heard this both from parents of special needs kids and from therapists who work in the system).

Also in Jerusalem, there are some very good neurologists, but the wait time to see them is insane. When my daughter was 13 days old, the pediatrician said she needed to see a pediatric neurologist within 24 hours, and there were no appointments through Maccabi or in a hospital for 2-4 months. He told us to just go to the emergency room, since that's the most efficient way to see a pediatric neurologist in this country.

We have had my daughter evaluated by lots of pediatric specialists - many of them standard, and this is usually through Maccabi or one of the hospital in Jerusalem (e.g. cardiologist, orthopedist, ophthalmalogist, gastroenterologist, nutritionist, follow-ups with the neurologist). Maccabi has never given us any trouble about seeing specialists as much as needed, and covers most, if not all, the costs. Similarly, necessary x-rays, ultrasounds, etc. are also covered.

One doctor suggested she get evaluated by a multidisciplinary clinic in Wolfson Hospital Holon, which has a Magen Clinic, which specializes in rare disease which are metabolic, genetic, and/or neurological. Maccabi covered the cost of this as well. The team there is very good for diagnosis, but we do follow up with individual specialists closer to home, and just check in there once a year, so I don't know how good they are for long term care.

All that positive stuff being said, I often have to be incredibly pushy/persistent to get my daughter appointments when she needs them and/or with who I want her to see (like call every day for 2 months in case there's a cancellation). I occasionally end up paying privately out of pocket in order to see someone sooner or who is not covered by the health insurance provider. Even with this, the wait is sometimes excessively long before we can get an appointment. This could be prohibitive if your son needs immediate therapy and care when you get here. There may be ways to get around this, but I don't know much about this, because my daughter was born here.

Also, there are only 2 doctors in the country (really, 2 doctors in the whole of Israel) who actually have any experience with my daughter's condition, because it's so uncommon. This makes things quite difficult sometimes. In the US, there are probably 200 doctors who have experience with her genetic syndrome, but Israel has a much smaller population, so the prevalence of the disease here is much lower, hence most doctors have never even seen it. I've had top genetics departments in this country who have never ever before seen a case. I was actually the one who had to suggest her specific diagnosis in the first place (not out of the blue, I have a Master's degree in human genetics and work in medical research, so I know about these things). But I don't want to be the authority on my kid's condition - I want someone else to know more than me, because I don't know enough and I'm not a doctor, and we need someone to help us out.

I also want to warn you that navigating a medical system in Hebrew is really not easy if it's not your native language. For me, it's not usually a big deal, because I work in medical research, so my Hebrew is excellent in those areas. But even for me (and I made aliyah over a decade ago), sometimes it's still hard. It's just an extra factor which can be draining. You need to be able to communicate well with each person who is giving your child therapy, each doctor you see, etc. I used to look for English speaking doctors and therapists, but I realized that if I want the best, they are not always English speaking. It's so critical to understand the details of what they tell you. So your level of Hebrew (or your ability to find a translator to come with you) is an important factor for both your sanity and your son's care.

On the plus side, you could probably also qualify for money / extra help from Bituach Leumi (national insurance), but my daughter doesn't qualify, so I don't know anything about it except it's a giant headache to prove that you qualify.

There are some helpful organizations - Yad Sarah has all sorts of services, programs, and equipment. Shalva is also an excellent, excellent organization which provides so many things. I'm sure there are more.

Overall, we are happy with the level of care and access to therapies/doctors/tests that our daughter has. But, sometimes I wish it were more/better. If my daughter had worse problems, I might consider moving out of Israel. But, I feel satisfied that she is getting the early intervention she needs and don't feel like we are compromising.

You might also want to post your question in the 'special needs' forum as well, as maybe someone with a child with more similar problems could give you more advice. In particular, I know nothing about autism-related services in Israel.

If you want to post more details about the types of therapies your son gets on a regular basis, what types of medications he needs, what specialists he needs to see, what other services he/your family receives, or more about his diagnosis, I could probably point you in more specific directions or give you more specific advice.

dats me

Tue, May 17 2016, 3:40 pm

Just wanted to add that if you have such an amazing team in the US I don't know if you will find the care here to be on the same level. In certain fields Israel is still behind, although they are catching up . I have heard this from insiders in the therapy field, it's not my own opinion . Please do thorough research before you come.

MyUsername

Tue, May 17 2016, 3:44 pm

You might want to consider contacting organizations which help anglos with their medical rights and services - 2 that come to mind are Chaim v'Chessed, and The Shira Pransky Project.

amother

Saddlebrown

Thu, May 19 2016, 7:32 pm

amother wrote:

WOW this is very informative any my head is spinnniingg!!
So I would have to leave my house for therapies? my son recieves almost 20 (30min) sessions a week from everything ranging from pt/OT/speech/vision/spec.ed and the therapist come to me.
My son has a seizure disorder (infantile spasms) hes very young but severely delayed and its too early to diagnose autism or retardation at this point. He does have to be monitored closely by a neuro as if (chas vshalom) his seizures return we need to get him on meds that will help right away. They cause intense regression....at the moment he is on zonegran meds. its a seizure medication for adults

my son has a very new genetic disorder...most doctors havent heard about it either.

why wouldnt your daughter qualify for money from bituach leumi?? Hpw come its such a headache?
How much therapy do you get for your daughter?
do you know anything about Cuevas Medik Exercises? Are there PTs with this training??

can you perhaps email me at infantilespasmsinfo@yahoo.com??
thanks!

amother

Yellow

Fri, May 20 2016, 8:12 am

So, regarding therapies and where they happen. As far as I know, they don't do in home therapies here (maybe you can do it privately, but it would be expensive). The system is just totally different here. First of all, it's split by age - daycare (in many forms) is up to age ~3 more or less, and Gan is after age ~3 more or less. Within that, there are 2 'paths' that I'm aware of.

My daughter is currently in a small private daycare which can meet her needs, and I take her to therapies at Hitpatchut Hayeled (Child Development Center) myself. It's important to note that my daughter does not need to go therapies every day - we are able to do exercises with her at home on our own every day between appts. My daughter will be able to go to a mainstream gan next year and I will continue to take her to therapies at hitpatchut hayeled - if the child is able, mainstreaming into a regular gan with or without a special assistant is available.

For children who are not able to be in a private or mainstream framework, or who could benefit from a framework more focused on their needs, the city has rehabilitation daycares (up to age ~3) and special needs ganim (after age 3) - some of these include therapies on site during the day, and for some you may have to take your kid to additional therapies in Hitpatchut Hayeled yourself. I think that this depends on age, your kid's problems, etc. These frameworks are also divided by type of problem, but I don't know as much about that. Free transportation is provided for the kids to and from these daycares/ganim. Since we haven't gone this route ourselves, I am less knowledgeable on this specifically, and only know what I've heard from other parents. I do believe your son would probably be in one of these frameworks.

As for bituach leumi, my daughter doesn't qualify for assistance, since she does not need services beyond what we get already and is not considered disabled because she is ambulant and we don't require extra care/assistance at home for her to get through the day. Keep in mind, all her therapies, doctors appts, and diagnostic/follow-up tests are provided as needed and are free or almost free, so I don't feel like we suffer at all because of this.

In general, in terms of how many services you can get and how often and what type, there is a difference between children who are classified as having a 'somatic developmental disorder' and everything else (sorry, I don't remember how autism fits into this). Also, under age 3, anyone, regardless of classification, can get as many services as needed, unlimited. Age 3 and up, the number of therapies stays unlimited for kids with somatic developmental disorders until age 18, but kids without a somatic developmental disorder get a limited number of therapies with the number allowed based on age. Your son might qualify for unlimited services, but I don't know for sure - a lot of it depends on the level of either intellectual disability and/or physical disability.

I wanted to put this up here so others can have the info if needed. I'll see if I can find out more for you and try to e-mail you next week.

Shabbat shalom!

amother

Saddlebrown

Mon, May 23 2016, 9:19 am

amother wrote:

THANK YOU SO SO SO VERY MUCH. All the pieces are fitting in and I am closer to understanding more and more. So, at this point my questions would be

do most children w/ mental retardation qualify as children with somatic developmental disorders if their disability comes from a genetic issue (that causes seizures for example and delays)

this is what I was able to find..

According to the August 2002 Ministry of Health definition, a somatic development disorder is any disability caused as the result of an illness or process which harms the central and peripheral nervous system, or the musculoskeletal system causing prolonged disability related to functioning capacity.
The definition refers to diseases characterized by developmental problems, such as:
Cerebral palsy (CP)

In addition do these individuals (those with mental retardation and more severe cases of autism/asperger's) also qualify for funds from bituach leumi? Or respite of any kind?

Im still looking into a type of physical therapy called CME (cuevas medek exercise) if you or anyone knows about someone trained please let me know.

amother

Yellow

Mon, May 23 2016, 5:02 pm

So, I think somatic disorders refer to disorders that cause physical disability. Autism and mental retardation are a different category. Over a certain 'percentage' of mental retardation / intellectual disability does qualify you for funds from bituach leumi. I don't know if autism does.

For some severe problems, you can qualify for an in-home assistant for help with daily tasks for your child. I don't know if your son would qualify or not - this is for severe illnesses.

If your son takes daily medication for seizures, I know that puts him in the category of 'chronically ill' as defined by the health ministry, but I don't know what that gets you.

As for Gan: If your son is under 3, then they have rehabilitative daycares.
If he's already 3 when you come, then he goes to special needs gan. The special needs ganim are split by category - language ganim, autistic ganim (for autism without other severe problem, as far as I know), and developmental ganim, and there may be other types (there are also special separate ganim for hearing or vision impairment). They like to mainstream into regular ganim as much as possible, but I presume your son would not be in that category because he has multiple problems. Because the ganim are split along such specific lines, I'm not sure where your son would be. My understanding is that the developmental ganim are for kids with physical problems mainly, but I suppose they also get kids with more complex problems, but I can't be sure. For example, we have friends with a son with Down's syndrome, who was at first in a gan that had just kids with Down's, but the next year was in the language gan with kids with a mix of disorders or problems because he wasn't talking. So it's complicated - placement into a special needs gan, including which type, is done by a special placement committee. Regardless, special needs gan is paid for by the government (like all gan here) and transport is provided. You probably want to make sure you live in an area where a variety of special needs gan types are available - not all exist everywhere.

I haven't heard of the type of PT you mentioned, I will try to remember to ask our PT if she knows about it (I am notoriously bad about these kinds of things, my brain is too full of our own medical stuff).

Ashrei

Mon, May 23 2016, 8:15 pm

I have heard of CME (cuevas medek exercise). Standard PT's seem not so impressed by it. Comments like, "I can see a MEDEK kid coming a mile away," and that it can be damaging. I have no idea how accurate any of this is, but I do trust my son's PT - PT is his main thing - and I can say that the standard PT, which I think is called something like NPT, neurological - it uses the brain and gets the child in the habit of physically moving and teaching the brain through this input (I have no idea what I'm saying, but basically, it made a lot of sense and I plan to stick to it).

My son had just a few MEDEK sessions.

I hope you find a MEDEK person to get a balanced opinion. My impression is that it's def not worth NOT making aliya over if that's the only thing stopping you.

Also keep in mind that EI services coming to the home is AWESOME, but it doesn't last. After 3 it's much harder to get therapists in the home, and after 5 it's like, impossible. By the time you get your ducks in a row for aliyah, it could be that this CON is nil.

I also want to thank amother Yellow for this amazing information. I have kicked the aliyah idea again and again because of our special needs situation, but this clarity really makes it seem doable.

OP I wish you every success. Go for it, go for it, go for it! Keep us "posted" Smile

amother

Crimson

Mon, May 23 2016, 8:35 pm

I know Keren Or is a great place for children with multiple (2 or more) disabilties-pays to check out

MyUsername

Tue, May 24 2016, 10:12 am

I want to encourage you to contact the organization Rosh Pina now before aliyah - they have Aliyah Support services for families who want to make aliyah with a special-needs member by helping them find appropriate services and I think they also have support groups. They do charge a fee, but it sounds like it would be worth it. The director is Chana Zweiter - Phone: Israel - 02-561-2072, USA - 011-972-2-561-2072, Email: rpmn@netvision.net.il or chana@kaleidoscope.org.il.

I don't know if I personally would be brave enough to make aliyah with a special needs child - planning ahead for every stage seems so important, and I hope that Rosh Pina can help you plan for an appropriate framework for now, and also for later for school and adulthood.

Good luck!

amother

Blush

Tue, May 24 2016, 11:18 am

My son has autism and we get 100% from Bituach Leumi. They didn't even have to see him.

amother

Yellow

Tue, May 24 2016, 3:47 pm

Good news - Ceuvas Medek Exercise does exist in Israel! There are a number of PTs who are trained in it, though you'd have to make sure that who you are seeing does it - there's no guarantee the PT who comes to a given gan/daycare does it though.

I'm sure you could do it privately (aka, you pay for it) otherwise though. . .

I might be able to get some more info, I'll e-mail you soon at the e-mail you put up a few posts ago.

amother

Mint

Thu, May 26 2016, 12:42 pm

HELLOO EVERYONE!
wow thanks everyone for all the great info. I have heard lot of skepticism regarding CME from alot of people. I have had the pleasure of working with Ramon Cuevas myself and all I can say is that for MY CHILD is has done wonders and for so many children I know. Tradition PT was doing nothing for my son...who now with CME has progressed AMAZINGLY. I cant speak for other people but all that being said I feel like sometimes traditional things don't exactly work for everyone. Sometimes you need a new approach, a new angle to be able to help a child especially in the special needs children world. Also I've unfortunately seen many CME therapists who have no clue how to do REAL CME. You might find a qualified person. I have a phenomenal person- please don't be put off my CME if traditional PT is NOT working. If it IS then dont fix whats not broken Smile

I am just really torn in two. I feel like my son really needs all his therapies till hes at least five and I cant bear the thought of going if I wasn't sure that he would get competent therapist and an abundance of it. I don't think he could physically teach himself to do all the regular thing that kids do so normally like cruising or even finger feeding himself. He likes to space out in his world very much so nd is perfectly content and not curious about interacting with anyone or anything....

How can I deprive him of his therapy in such a crucial time of his development???

so confused..I just done know!!

FranticFrummie

Thu, May 26 2016, 12:59 pm

I am not a doctor, so take this for what it's worth:

Israel is pioneering a treatment for drug resistant severe seizures using cannibidol oil. Tikun Olam.com has developed a strain of high CBD content oil,with the lowest possible THC content. It has been shown to work where other therapies have failed. It is available here with a doctor's prescription. Google "CBD seizure therapy" or "Charlotte's Web CBD" so you can do your own research. Right now, Israel is the ONLY country you can get this high CBD pharmaceutical grade concentrate.

I have epilepsy and an unrelated tremor disorder, and I'm in the application process to get approved. I had some good results with lower grade CBD in the US, and I'm really hoping to have better results with a better grade product.