Meet one of our program therapists: Ahmad on wheels

Ahmad Mutlaq is one of the heroes of our Therapists on Wheels program.
This photo is not from Beer Sheva.

People who haven't heard of the Malki Foundation before often tell us how surprised they are to hear about some of the work we do for families raising a child with usually-complex special needs.

Our Therapists on Wheels program is a good example. It was created because we knew about families living in Israel's periphery communities - the far north and the far south of our small country. Too often, when those families bring a child back home from (sometimes prolonged) hospitalization or institutionalization and need the services of a good local therapist, the challenge can be enormous. 

That's because Israel has far too few therapists serving families in the periphery and not much seems to be getting done to fix the chronic problem.

Since 2011, with our tiny but growing resource base, we have been addressing the problem the best way we can. We plan to keep doing this, and growing the program commensurate with our finances, while the government decides what it's going to do about this very serious problem. Meanwhile, to learn a bit more, there's background here expanding on the origins and mission of (to use its full name) the Zlata Hersch Memorial Therapists on Wheels Program. To be clear, it delivers something unique - and uniquely valuable and appreciated - to families who need our service.

What makes Therapists on Wheels really special is, of course, the professionals who provide the service. Ahmad Mutlaq is an excellent example of what we mean. Over on the Malki Foundation's Facebook pages [here], there's this brief and warm portrait which we think readers of our blog will enjoy:

A highly trained, kind-hearted physiotherapist from a village called Kfar Bi’ina near Karmiel in northern Israel, Ahmad is currently living in Be’er Sheva so he can help the many children in the south who need physiotherapy. 

When asked about what he likes most about his job, Ahmed spoke about the progress he sees in the children that he works with. He said “Any progress, no matter how big or small, gives me the best feeling in the world” and reminds him why he decided to be a physiotherapist in the first place. 

If he doesn’t see progress, he asks himself “why didn’t it work?” in order to expand his mind and try to think about the situation in other ways. 

Despite all his hours of additional training and certifications (autism, baby massage, acupuncture, personal training), Ahmed feels that he still has so much to learn. He is planning on starting a master’s degree in an area related to physiotherapy for children. Ahmed has worked in clinics in Israel and Germany and also provides physical therapy for special education kindergartens run by Israel's Education Ministry. When he is not working, he loves to travel and has traveled all over Europe and Israel. 

Ahmad is currently treating two ultra-Orthodox Jewish children in Arad through our Therapists on Wheels program. One is Leah, a 4 year-old with a syndrome that causes weak muscle tone, failure to thrive and severe intellectual disability. The other is Daniel, a 3 year-old with severe neurological damage resulting from bacterial meningitis, epilepsy, quadriplegia, and other neurological and physical issues. 

Both sets of parents speak emphatically about Ahmad's compassion, dedication and professionalism. And we couldn’t be happier with his professionalism and his work with the children. 

Thank you Ahmad for all that you give! [This post originally appeared in the Malki Foundation Facebook page here.]

Most of the comments posted on Facebook when this first appeared this week are so encouraging, we felt you would want to see them.

We plan to tell you about some of our other therapist heroes in the coming weeks.

Therapies for children with special needs: What the Ombudsman found

Lining up to get attention at a Kupat Holim clinic in a periphery town few years ago
[Image Source: Wikipedia]

Failures and shortcomings of government are the most significant factors behind the bitter reality that children with disabilities in Israel do not get the care they need.

A startling report issued a short time ago by the State Comptroller (Ombudsman) on paramedical therapies for children with special needs in Israel articulates a depressingly long list of obstacles, deficiencies and outright failures. This is alarming given that the international Convention on the Rights of the Child (to which Israel is a signatory) requires the State of Israel to grant each child, and those responsible for his/her care, the appropriate assistance as required by his/her personal and specific situation.

Among the report's troubling findings:

• Lengthy delays: The State Comptroller's investigators reported waiting times of a year and more in order for a child to receive therapies. Waiting times of many months are experienced by families seeking to get an evaluation. The reality of lengthy waiting times is often devastating to the development of a young child with special needs.
• Chaos: The investigators found an overwhelming number of separate service providers including health maintenance organizations (HMOs - called Kupot Holim in Hebrew), the Ministry of Health, the Ministry of Education, hospitals, local government authorities as well as a range of NGOs - non-profit organisations with a striking lack, meaning absence, of any entity to provide coordination and/or oversight. Each of these service providers operates in accordance with its own home-made rules and procedures. The predictable result is incoherence in relation to criteria for eligibility to receive treatments, and unjustified rejection of reasonable requests for therapies in circumstances where the child may (or might not) have received service from one or another of the other service providers. 
• An example of the chaos: Children in day care centers are frequently told by the family's HMO/Kupa that their request for therapy is rejected on the grounds that the children received them at the day care center.  (This as a matter of fact is often untrue - day care centers are often ill-equipped to provide the services which the Kupa claims they delivered.) Moreover no one (for instance, not the Ministry of Health) supervises to ensure that the child does in fact receive therapies. Or ensures that the therapies meet any relevant standards. The result, far too often, is children simply miss out on essential therapies or - as the report concludes - suffer developmental harm by getting therapies that fail to match up with their personal and specific needs.
• More chaos: The Kupot too often flatly refuse to authorize (i.e. pay for) therapies for children who are enrolled in the Special Education frameworks. This includes refusing to authorize therapies that are listed in the Ministry of Health's "Basket of Services" that the Kupot are obliged by law and contract to provide. And that in many cases they claim to provide even though in reality they do not.
• Adding to the hardship, the Kupot exhibit a strong preference to refer children with special needs to the in-house child development centers operated under the Kupa's own auspices. They do this instead of approving treatments in hospitals or other centers which may be more convenient or more suitable for the child and the child's family.
• Six child development centers have been shut down by the Kupot since 2009, most of them in periphery communities. The decision to close them is made with no regard for the enormous negative impact this has on access to services.
• Though the law specifies that, to the extent possible, children with what are termed complicated development issues should receive all their treatment under a single roof for obvious reasons relating to the burden on the family. In reality, the Kupot frequently require the families to attend multiple centers and clinics in order to receive the treatments to which the child is entitled.
• Breaching the law: As a result of these serious failures of performance and of policy, children with special needs are frequently not getting the therapies to which they are entitled under the law and which are essential to their well-being and development. 
• Misallocation of funds: The Ministry of Health does not allocate a budget for therapy hours in special education day-care centers to the local authorities. So the local authorities in turn don't allocate a therapies-specific budget to those special ed day-care centers. The result is that portion of the overall budget allocated from the local authority to the centers which is supposed in some general way to be applied to therapies for special-needs children ends up being channeled to other uses such as teaching hours. So what happens to the needs of the children who were supposed to receive funded care? A good question. You can probably guess the answer.
• No supervision: The report cites a complete failure of supervision among service providers. The result is that it is unknown whether therapies are given, and if they are, to what standard.
• Inadequate staffing levels: The report refers to a general shortage of professional staff throughout the country and especially in Israel's south, and makes clear that no remedial plan for future improvements exists.

From the report (we translated the text to English)

Here at the Malki Foundation, we are only too well aware of the deficiencies in the system. In fact, our work was designed from day one to deal with them and to provide bypass-road solutions to the families who are the system's principal victims.

It's gratifying to see a government figure investigate them, report on them and place them in the public space for reasoned discussion and - dare we hope? - early remediation.

We raise money from supporters to fund the therapies that children with disabilities are entitled to by law but are not receiving because of the shortcomings described by the Ombudsman. We do it with great care, and with checks and balances that we can describe another time. Now in our 17th year of operation, we can say with confidence the approach we adopted works. In fact, the families who benefit have told us it works really well.

We sincerely hope this report will shine a bright light on the problem and spur the agencies involved to significantly improve the way they provide services. Only then will children with disabilities in Israel be able to reach their potential and have the quality of life they and their families deserve.

In the meantime, please consider partnering with the Malki Foundation and join with us in enabling children with disabilities to receive life-enhancing therapies.

From our files | Ariel, 3

Hydrotherapy (illustrative image)

When Ariel's mother reported back to the Malki Foundation office in May 2015 about the effects of the therapy sessions that we are funding, it was hard not to hear the excitement in her voice. Just three years old, little Ariel is significantly affected by developmental delay. His parents applied for and got our support for hydrotherapy sessions close to where they live.

She is certain that there has been a lot of improvement, Ariel's mother says, describing his current, improved condition now as a miracle. Before taking advantage of the therapies (he received 27 of them from a qualified hydrotherapist between January and October 2015), he was unable to move his body independently, and could not crawl. Now he has started taking his first steps. 

In a November 2015 follow-up, we were told that Ariel's hydrotherapy strengthens his arms wonderfully. The staff at the pool came in for a lot of praise. The little boy's progress has enabled him to be moved into a special-ed kindergarten which is something the parents really wanted. 

Unfortunately, though he is supposed to get a range of therapies there, physiotherapy somehow doesn't happen, at least not for Ariel. Nor is the family's health fund (their kupat holim, in Hebrew) able to provide it for him. The mother tells us that she has the option of transferring back into the day-care center where he was before being admitted to gan. But that would be a step backwards in so many other ways, and they are reluctant to give in and surrender the progress he has made. 

Airle's family call the hydrotherapy that he gets with Malki Foundation intervention "a life saver". They see at as the one way - the only way - he is being helped to strengthen his muscles and make physical progress. 

...

Via the Malki Foundation's Therapies at Home program, described here, many thousands of therapy sessions have been enabled for families in Israel who know they ought to be getting them - or getting more of them - through the conventional government channels or in the framework of their child's education. But having the right to these therapy sessions and actually getting them are often two very different things. 

Life for families with a child who has severe special needs is already over-filled. And that's before taking account of the stress that comes with the territory. The Malki Foundation's support is designed to alleviate some of those pressures while making a meaningful difference to the family's ability to access all-important non-medical therapy services without less of the aggravation of fighting an often-difficult system. We provide an all-important safety net. The Malki Foundation programs aim to empower the family of a child with special needs. 

Though the facts and figures are always true and correct, children's names used in these published file reports are always fictitious in order to protect the privacy of the child and the family.

Looking back | Looking forward

From our Annual Report

With the Jewish New Year festival just behind us, and the Day of Atonement just ahead (on Tuesday night), this is the season of introspection and reflection.

At the Malki Foundation, as usual, it's been a busy year, but also a year of some considerable achievements.

Several thousand families scattered across Israel have benefited from one of our three programs: through the Therapies at Home program, or from the Keren Malki Special Equipment Lending Unit (our joint venture with the Yad Sarah Organization), or via our Zlata Hersch Memorial Therapists on Wheels program. Sometimes there are happy endings, but more often there are light and bright moments in lives - of families, of the child with the special needs - that are accustomed to challenges of both the long-term and acute kind.

If you are already on our mailing list, you have probably received in the past week a brightly-colored booklet entitled "Empowering Children for a Better Future | Annual Report". It provides an insight into the numbers and facts that make up the vibrant life of the Malki Foundation and the families we are so pleased to be able to support and serve.

If you have not already seen it, a digital on-line version, complete with all the text, graphics and charts of the printed version is just a click away:

The finishing line... and the start of more great things to come

Been following our recent posts about the little boy who doesn't stop, and the remarkably supportive family who never say never, even when the doctors told them their son was never going to walk?

This past Friday. May 15, 2015, that smiley young champion completed his first ever Givat Shmuel Fun Run. Click on the YouTube video clip above to get a taste of a memorably beautiful and exciting achievement.

At first, covering a two-kilometer course might not seem like the toughest challenge around. But considering what he and his family had to go through to get to this point, it might as well have been climbing Everest. 

And they got there.

At the finish line - but really, it's just the start
of many great things to come!

It's not too late to express appreciation and support for Netanel and his family. They created an online page here for people to make donations in honour of his achievement. All proceeds go to the Malki Foundation. 

It's a relationship about which we are exceptionally proud. And very grateful that he and his family chose to connect us to the great day!

Go Netanel! We are all so proud of you!

Netanel and his unstoppable family [Audio]

This image of Netanel and one of the key members of his
support team (his mother, actually) appears on the crowd-funding
donation page they established to benefit the Malki Foundation

Over on Voice of Israel, they have a segment of their Josh Hasten Show that covers the story we mentioned here a short while ago - the story of Netanel ["The amazing power of never say never", May 6, 2015].

The shows presenter speaks with Netanel's mother's cousin and with the Malki Foundation's own Debbie Fishman. VOI provided this background:

10-year-old Netanel serves as an inspiration to other disabled children. Debbie Fishman, executive director of the Malki Foundation, joins VOI's Josh Hasten to discuss [the] May 15 "fun run" to raise funds for children with disabilities. Fishman tells the story of Netanel, who was born with cerebral palsy and never walked -- until numerous surgeries and years of therapy enabled him to take his first steps not long ago. This was thanks to the Malki Foundation's funding of a large part of his [non-] medical expenses. As a way of giving thanks, Netanel will be participating in the upcoming event in Givat Shmuel. Joining in the conversation is VOI's Pinchas Orbach, who happens to be Netanel's cousin. For more information or to donate: http://www.rootfunding.com/campaign/keren-malki-nethaniel

Note: Netanel is the Hebrew equivalent of Nethaniel.

For nearly ten years, the Malki Foundation has encouraged Netanel's unstoppable family in their dream for Netanel to walk by providing the support needed - via our Therapies in the Home program - for those essential non-medical therapies. Today, Netanel walks.

His astonishing progress is a tribute to his indomitable spirit, and to the energy and will of an unstoppable family. Here's an audio recording of the Voice of Israel Netanel story that went to air on May 13, 2015:

Go Netanel!

Loving lives lived on the front lines

Running for the nearest shelter as a rocket warning is heard in one of Israel's
southern cities, July 9, 2014 [Reuters]

In Israel’s southern communities, life is finally returning to a semblance of normalcy. A tumultuous summer and a war in which every home was on the front line of a rocket-fueled terror campaign waged from the Gaza Strip and the Sinai Peninsula is receding into the background, at least for now. 

The anxieties have not. Neither have the pressures.

For families raising a child with serious special needs, the challenges of living ordinary private lives in the periphery communities (as the towns, farms and communal settlements south and north of Israel’s major population centers are called in Hebrew) add another layer of difficulty. 

With little fanfare, the Malki Foundation initiated a program in 2011 that addresses them in a unique, practical and very effective way.

Seed-funded by a generous grant from an Israeli family who seek to avoid publicity, the Zlata Hersch Memorial Therapists on Wheels Program provides professionally qualified and passionate mobile therapists who travel to where the special-needs children live, delivering quality paramedical therapies - under the constant guidance of a Jerusalem-based Malki Foundation team of volunteer professional advisers - in those relatively distant communities.

Here’s the key to understanding the need. 

In those areas, access to quality paramedical therapy services is inherently more difficult. Fewer therapists are available, and distance makes it hard to bring the child to the therapy centers.‏ The Malki Foundation has enabled tens of thousands of paramedical therapy sessions via our Therapies at Home Program, it’s a sad reality that we could give families in the far south and the far north an open cheque and for the most part they would be unable to spend it. Our Therapists on Wheels Program, now in its fourth year, is a creative solution to a challenge that has suffered from inadequate attention by the authorities for too long.

By the numbers: From a Malki Foundation brochure, the full text
of which can be viewed online here

Note that the Malki Foundation provides support for five classes of paramedical therapy: (1) speech therapy, (2) occupational therapy, (3) physical therapy, (4) therapeutic horse riding and (5) hydrotherapy. But because of the need for facilities that cannot be delivered by car (meaning horses and pools), our Therapists on Wheels program focuses exclusively on the first three. 

We currently support families living in these southern periphery communities: Be'er Sheva, Cochav Michael, Dimona, Kiryat Gat, Klahim, Mitzpe Ramon, Netivot, Ofakim, Otzem, Rahat, Sderot, Shokeda. And these northern communities: Acre/Akko, Hurfeish, Kfar Manda, Ma'alot Tarshicha, Meiron, Meona, Misgav, Peki'in Hahadasha, Safed, Shorashim, Tiberias.

There’s more information about how our programs work in this brief YouTube video.

Here below is a small taste of how providing therapies at home, and therapists on wheels (where appropriate) to children living far from Israel’s center works when the rockets stop flying for a while. (Note: we have disguised the children's names.) 

Ettie is a gorgeous child of two, living in the southern city of S. Its proximity to the Gaza Strip gets S. into the news headlines much too often. But that’s only part of what Ettie’s family are concerned with. She depends on a ventilator for her well-being. During the recent fighting, she rarely went out of the house, and spent weeks confined to the family’s mamad (safe room, in Hebrew). So did her mother, who felt she could not go out to work because of the need to bring Ettie and the other children into the shelter whenever the incoming-rocket siren was heard. It only gives them a few seconds of warning, and every moment counts. When mother is away, Ettie is normally at a day-care center in Kiryat Gat but under conditions of war, it was closed for many weeks. When we checked in with Ettie’s mother at the height of Operation Protective Edge, she was worried about the way her daughter was not eating properly. Now that things outside are quieter, mother is able – with the help of a therapist whom we send down to Sderot - to devote more attention to getting on top of that aspect of her little girl’s problems. 

Yair is also two. He lives in O., a community in the south, and normally spends his days at a ma’on (day care centre) in Be’er Sheva which, of course, was closed throughout the fighting in the south. Mother was at home with him throughout that period and, because of the cerebral palsy (CP) that keeps Yair confined to a wheelchair, she was – in the words of our program co-ordinator in Jerusalem who spoke with her by phone - “beyond exhausted”. Now that the ma’on is operating again, he is back in the daily framework and his parents are trying to arrange to pick up a new wheelchair and leg braces. Regular visits by the OT (occupational therapist) “on wheels” whom we send to the town of O. are a critically important part of Yair's family’s ability to cope. 

Guy is an 11 year old with quadriplegia, living with his family in Be’er Sheva. His 13 year old brother Sergei was the person who most often had to bring him into the safe room when – as happened so often during July and August – the sirens wailed. (Generally, they had 60 seconds of notice from the when the siren was first heard.) Guy normally takes part in regular horse-riding therapy sessions which he loves. But the IDF Home Front Command ordered the horse farm to be closed while the fighting raged. It’s open now and Guy is delighted.

Hundreds of children benefit today from the Malki Foundation’s 3 programs. They come from a variety of backgrounds. But they have this one thing in common: every one of them is cared for by loving families who have made the decision to have their special-needs child live at home rather than see him or her handed over to institutional care. The Malki Foundation is there to empower those families and to do whatever we can so that the outcomes are as good as they possibly can be.

We will have some more experiences to share in an upcoming post. 

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