To understand and to be understood

Communicating (illustrative)

Lisa Scharf, a seasoned and highly regarded speech therapist who is one of the cornerstones of the Malki Foundation's Zlata Hersch Memorial Therapists on Wheels Program, has been working with Dror ["About Dror"] and other children in Israel's southern periphery communities. The outcomes are impressive and very moving.

This week, she sat down to share with us some aspects of what's entailed. 

“My method is different from many other therapists. Normally professionals treat their patients. But I believe we should work with all the family. It is more complex, but also more realistic and effective.” 

According to Lisa, the home treatment enables the therapist to understand more about the family’s life and relationships, enabling him or her to formulate a session that best fits with their conditions and needs. 

Moreover the process has the effect of empowering parents by helping them find ways to stimulate the child and to continue the therapeutic benefits between sessions.

Lisa explained that her work is not limited to speech but addresses communication in general. There are cases where the child may not manage to acquire the skill of articulating words but will learn to communicate by means of Assistive and Augmentative Communication (AAC) devices. 

The most important thing, she emphasizes, is to give the child 

“a way to understand and to be understood, to communicate with the people around them and impact their world. The younger we start working with the child and AAC the better results we get, and we see the child being able to interact with the world around. And sometimes it even leads to actual speech.”

Speaking of her work with Dror, Lisa shared some initial impressions:

“On my first visit to Dror’s kindergarten, all the teachers and assistants told me that he didn’t understand anything that was said to him and was incapable of using a computer for communication. I knew they were wrong. I could see that Dror understood and that all he needed was encouragement and the patience to learn how to use the device.” 

After months of speech therapy along with occupational therapy - to improve his finger control and pointing - Dror today uses his computer to communicate his needs, wants and feelings. He is even starting to say a few words.

Treating children with complex needs calls for a special type of professional. Lisa viewed this as her calling from a young age. She maintains a special connection up until today with the children she treated years ago. She makes sure to check in with the families from time to time and to enquire about the child’s progress even years after her involvement frew to a close. 

Therapists like Lisa, and families like Dror’s, inspire us each day to work that little bit harder to help build a better world in which all children will be given the same opportunity as Dror. 

The unique challenges of Israel's periphery communities

Ahmad: He's mentioned below

Earlier this week, Israel's parliament, the Knesset, held an important conference under the title "Periphery at the Center". Some 500 participants attended including government officials, domain experts, mayors, local council heads, journalists, academics and Members of Knesset.

The event focused on the challenges facing Israel's outlying areas - the periphery communities located relatively far from Israel's centers of population in Jerusalem, Tel Aviv, Haifa and the Coastal Plain.

According to a Knesset report [here], the subjects under discussion included economic and social resilience, employment and economic development, personal security, education, culture, art and aspects connected to how the periphery communities are represented in the media.

"In Israel there are 257 local authorities, and 200 of them are dependent on the government's support," Ministry of the Interior Director-General Mordechai Cohen said at the opening. "The heads of local councils go from ministry to ministry and beg for alms! We need to think outside the box."

Data presented by the Central Bureau of Statistics showed that communities in the periphery have the highest percentage of smokers and people who are overweight. And the lowest percentage of people who exercise.

Among some of the other worrying data points presented to attendees:

• In the periphery, 30.9 out of 100,000 people are killed in road accidents, compared with 18.6 in central Israel communities.
• About a quarter of the residents of periphery communities simply give up on getting medical treatment because of distance factors.
• 54% of residents travel great distances to receive medical care
• A third of periphery residents are unhappy with the state of available health services

At the Malki Foundation, we are only too aware of the challenges and the failures that follow. We are proud of our Therapists on Wheels program which for years has made a valued, straightforward and relatively simple contribution to allieviating some of the periphery's problems.

Ahmad Mutlaq is one of the talented and dedicated physiotherapists who works in our program. He travels to the homes of children with disabilities in the South in order to deliver in-home, and much needed, therapy service. Read more on our website about Ahmad and the children he treats ["Bringing therapy to children in the south"].

Go, Rob, go!

Rob Taub

Support Malki Foundation UK's Rob Taub as he runs in the Royal Parks Half Marathon on October 14, 2018 by clicking on this link.

The 13.1 kilometer route takes in some of the British capital's world-famous landmarks on closed roads and four of London's eight Royal Parks: Hyde Park, The Green Park, St James's Park and Kensington Gardens.

All proceeds from Rob's run will go to help fund therapies for children with disabilities in Israel via our acclaimed Zlata Hersch Memorial Therapists on Wheels Program, which has been operating successfully and efficiently since 2011.

He's been training like crazy so we're sure he'll do great!

If you live in London, please be sure to go and cheer him on!

Thanks, Rob, for your commitment to the Malki Foundation and to children with disabilities in Israel!

UPDATE 2:30 pm Jerusalem time, October 14, 2018: Well done, Rob! Finished the course in a little over two hours. Next year!

And sincere appreciation to Yael Bloom who also ran the race for Malki Foundation UK and David Berkley who was obliged to withdraw on the morning.

Job very well done, friends.

From our files | Two-year-old Ido and his challenges

A representative image; this is not Ido and Ido is not the real
name of the child profiled in this report

Ido was born with serious development delays, with birth defects and with respiratory difficulties.

Now a smiley, friendly two-year-old boy, he lives with his parents and three siblings in Israel's northern-most coastal city, Nahariya.

Because of digestion and motor issues, Ido must eat only pureed foods and in small amounts. He has to be woken twice each night to eat so that his nutritional requirements are met. 

His breathing is aided by a tracheotomy tube like the one you see in the photo above.

Starting in September 2017, Ido has been getting speech therapy and physiotherapy at home through the Malki Foundation's Therapies at Home program. The physiotherapist, selected always by his parents as a matter of our policy, is focusing on helping him sit up straight (did we mention he is grappling with scoliosis?), improve his movement by enhancing his crawling skills, and advancing his ability to play and to communicate.

Ido’s mother called the Malki Foundation office in Jerusalem recently to say thank you. She mentioned how he has begun crawling, and now says a few words. When Ido first said “Abba” (daddy in Hebrew), the family encountered a deeply emotional moment. 

Ido's mother told us that the support her family gets from the Malki Foundation does more than simply enable therapy sessions that would otherwise put a great strain on the family's already-stretched resources. It gives her the physical, mental and - yes - economic strength to help her son through the multiple challenges he faces daily on the road to eventual greater independence.

The Malki Foundation's therapy programs have enabled many thousands of therapy sessions for families in Israel whose needs are nominally met via the conventional government channels or in the framework of their child's education. None of these therapy sessions would have happened if the families had to rely only what the government and the health funds provide. Our work makes a positive difference for hundreds of families and the children with special needs whom they love. 

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

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.

Helping Yonah learn to eat and drink on his own

OT for acquiring eating skills [Illustrative image only]

Yonah is 5 years-old, a happy child who has Down Syndrome and in addition was diagnosed with West Syndrome as a baby. Sometimes known as Infantile Spasm, West is a severe form of epilepsy which is associated with brain damage and developmental delays.

He crawls and can take a few steps with encouragement and is eager to learn. Yonah laughs out loud when enjoying activities with his family and therapist.

Due to his complicated and difficult medical situation, Yonah is not able to go to day care and his doctors have recommended that he remain at home for another year. Although he receives therapies as part of his home-care plan, what he receives is nowhere near enough.

Yonah's very dedicated parents searched for a way to meet his needs.

Thanks to the Malki Foundation's innovative Zlata Hersch Memorial Therapists on Wheels Program (TOW) program which started in 2011, Yonah gets Occupational Therapy sessions in his own home at least once a week. The therapist, whose time and travel expenses are entirely covered by the Malki Foundation program, drives about 25 minutes there and back each time she makes a professional visit to Yonah's family.

This year’s therapy goals are to encourage Yonah to achieve independent eating and drinking, as well as to start using a touch screen for communication.

To some, these may seem like relatively minor skills. But acquiring them will have an enormous impact on Yonah and on his family’s quality of life. We're proud of all of them, and of the wonderful TOW program that makes such a difference in people's lives.

We're pleased to announce Ahuva is walking - and going to attend a regular school

Illustrative image via Flickr (Creative Commons)
This is not Ahuva, and Ahuva is not her name. The facts are accurate and
real. We strictly respect the privacy of all the children in all our programs

Ahuva first came to our notice when she was just four months old. Born with Down Syndrome, she was diagnosed as having significant cognitive and physical delays.

Ahuva's parents knew she needed special therapies in order to help her develop and reach her potential. But they quickly learned that the only clinic with appropriate therapists for infant care was in a distant city. The family didn’t have a car and lacked the funds that would have made getting there easy.

The result was that Ahuva was not receiving any treatments at all when her family made contact. The team at the Malki Foundation's Jerusalem office quickly arranged for Ahuva to be admitted to our Zlata Hersch Memorial Therapists on Wheels Program under which we provided 100% of the costs of a specialized therapist to come to the family's home and to work at regular intervals with Ahuva. The innovative Therapists on Wheels program has been in operation since 2011.

With the therapist’s help, Ahuva was able to walk at two years old to the delight of her parents. Ahuva's mother reports:

“Thanks to the intensive work with the therapist made possible by the Malki Foundation's intervention, our Ahuva is now going to be able to be mainstreamed and attend a regular pre-school with other children. We couldn't be prouder.”  

It's a tremendous honour to be able to extend our support to families like Ahuva's. And it's a great privilege to say "thank you" to the kind supporters without whom our programs would not be able to operate.

Looking back at a year of achievement

Detail from Arthur Szyk's delightful "Rosh Hashana"

With the approach of Rosh Hashana, Jewish New Year, this coming weekend, we are delighted to publish here the Malki Foundation Annual Report for the period July 2015 to June 2016.

We would love to be able to say that our three programs have exploded in size to meet the steadily growing demand.

The fact is, demand is indeed steadily growing.

But until we crack that tough nut of managing to raise significantly larger sums each year, our ability to provide more therapies, more equipment, more home visits for the benefit of families caring at home for a child with serious disabilities, is limited. The gap between what we could do and what we do do remains frustratingly large.

Please take a look at what the Report shows, and if you don't mind, please show it to your friends. We're proud of what we have again achieved this year and we hope our supporters will be too. We're convinced that, as more people get to know what's being done - day after day - at the Malki Foundation, the smaller that gap is bound to get.

For more about our three programs, click to view

• The Therapies at Home Program
• The Zlata Hersch Memorial Therapists on Wheels Program
• The Keren Malki Equipment Lending Unit. 

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 challenges that families face: a therapist-on-wheels shares her perspective

Ruth helps a young man master his shaver

Ruth Bouskila, 58, has been practicing occupational therapy since 1984 in the south of Israel. After many years working in a clinic where she treated mildly disabled children, she made a decision in September 2012 to leave her job and start working with Keren Malki’s Zlata Hersch Memorial Therapists on WheelsProgram. Via this initiative, she makes home visits (as at the time this interview was conducted) to two severely mentally and physically disabled children, working with them as well as their families. Interviewing her on behalf of Keren Malki was Fern Allen.

Ruth, how would you characterize your motivation for working with Keren Malki’s Therapists on Wheels program?

At the beginning of my career, I wanted to see significant changes in my clients and I wasn't ready to deal with the complex issues involved with working with severely mentally and physically disabled people. I wanted to do work where I could see huge leaps in a child’s life. Now, 30 years later, I see that Keren Malki offers a particular and attractive kind of challenge because it provides answers and solutions for families who might otherwise end up falling through the cracks.

It's inspirational to see parents accept that their child cannot do certain things, but can see him or her gradually become more independent in relation to their own self-care tasks. Now with my work with Keren Malki, I am taking small steps with my clients. I am making a difference in the child's and the family's lives. For all of us, it can be a steep learning curve.

Why is it so important to have the occupational therapy done in the client’s home?

By going into the home, I see what the child's and the family's needs are. I can really get into the nitty-gritty of their issues. I see the challenges they deal with daily. It’s 200 percent more effective. These real-time problems often aren't verbalized in a sterile therapy room.

It is also rare that the health insurance companies cover house visits. By seeing the child and their caregivers in the home through Therapists on Wheels, I can give tools to the parents that help to improve the quality of the whole family's life.

What gaps in the health-care system can the Therapists on Wheels program fill?

The health insurance companies generally limit the funding of extensive therapy to the age of 3 to 4. By the time they child reaches age 5, what they offer is very limited. For a child with mental and physical disabilities, that means they simply do not get sufficient therapy. Keren Malki's Therapists on Wheels program addresses that gap. For the children I see, who are complex-needs kids, it is extremely significant that they have the continuing therapy that the Therapists on Wheels program provides.

Can you share some examples of your work and successes?

A boy called Uri, age 18, needed help with self-care tasks - things like washing himself properly. He is mobile but his range of movement is quite limited. Visiting him at home, I could see he could benefit greatly by having a long brush to wash himself. I showed him how to use the brush, where to place it in the shower, how to bend down and clean his feet and toes and so on. I would have been oblivious to the need if my interaction with him were limited to an institutional setting.

Another thing: when Uri eats, the food tends to drop on the way to his mouth and messes up his clothes, the table and floor. You can work on those things in a clinical setting but when you are in the client's home, you can see the height of the table, just as an example, and the kinds of foods he eats. Being there, I can address the actual problems the family faces. In a clinic, it's not that easy. The table and chairs are not the same height as those in their home, for instance. I suggested some ideas to Uri’s parents about which utensils to use, for example, so that the food would not fall off. Again, these are the real problems that you often miss in a clinical setting.

Here's another. Yosef Chaim, is a boy of 9 who has severe mental and physical disabilities. He cannot feed himself. I showed his mother how to give oral stimulation to his mouth area so that the nerves and muscles would start to work more efficiently. Through that stimulation, Yosef Chaim moves his mouth and lips better and takes his food actively and more efficiently. I encourage him to hold the teaspoon, have it in his control and use it with a greater degree of independence.

When I began working with him, his regular caregivers would hold the bottle to feed him. When I told his mother that he could hold the bottle himself, she thought I was nuts! But I knew he could use his hands to throw a ball, and that he had an understanding how to use his hands toward a specific goal. I designed some guided exercises for him and for the caregivers. Now he holds the bottle and is certainly developing the skill. It’s a small step for a child of 9 years old – but it’s a step in the right direction!

Why is Keren Malki’s Therapists on Wheels Program important to you?

Well, my reasons are personal. I read about how the Roth family established the organization after their daughter Malki was killed [in the Sbarro restaurant terrorist attack in 2001] and that they have a younger child who is disabled. It happens that I myself lost a daughter. She died in India at age 22 when the bus on which she was traveling overturned. Wanting to do things in her memory is very meaningful to me. Against those background issues, I feel that taking part in Keren Malki through its Therapists on Wheels program is a privilege that is especially meaningful to me. I feel inspired by what is being done in a child's memory.

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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