Wednesday, May 24, 2017

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.

Friday, May 19, 2017

Look for Hadar. She's here.


Can you find Hadar?

Hadar is a 17 year old young woman with cognitive and physical disabilities. She lives with her family in one of Jerusalem's south-eastern neighborhoods.

Like many children you know, she attends school, visits the shops with her friends, goes to synagogue on Shabbat and holidays and also goes to Bnei Akiva youth movement meetings on Tuesday and Saturday afternoons.

A few weeks ago, her local Bnei Akiva branch was honored with a visit by Nir Barkat, the mayor of Jerusalem. He was there to attend the inauguration of their new building.

If you look very carefully at the photo, you can see Hadar sitting in her wheelchair in among all the other children.

Like them, she is a child who enjoys being among her friends and in the community. So far as the people around her are concerned, Hadar is part of the group.

This is what inclusion is all about.

Thursday, May 11, 2017

Aligning our activities with some genuine social-action pioneers

JAFCO's home page
It's been a pleasure for the Malki Foundation to partner recently with Israel Children’s Aid Network (ICAN) and to work together with its fine people to help children in Israel with severe special needs (and their families) have access to a better life. 

ICAN is a remarkable organization. Its founders, Ron and Deni Simon, are American child welfare pioneers and respected serial social-change activists. 

Ron founded the extraordinary Jewish Adoption and Foster Care Options, also known as JAFCO, a pioneering force in the child welfare and foster care field. Its JAFCO Children’s Village, located on a five-acre site in Sunrise, Florida, provides much-needed services for some 350 abused and neglected children. It's been described as the model for future state-run foster care programs nationwide and
provides a full continuum of high-quality services including foster care, adoption, family preservation, mentoring, independent living and developmental disability programs. The JAFCO Children’s Village, consisting of an Emergency Shelter and Six Group Homes, is one of the most unique and innovative programs in the nation. The JAFCO Children’s Ability Center supports families raising children with developmental disabilities by providing family enrichment, resources, and respite care all within one state-of-the-art center. JAFCO recently became officially licensed as a Foster Care and Adoption Agency in PA... Our vision is to provide a privately funded model child welfare program which can be replicated by other communities around the country including a continuum of high
-quality family preservation, foster care, adoption, emergency shelter, group home, independent living, and mentoring services to at-risk and special needs children and
families in the community and support, treatment and respite care for families raising children with developmental disabilities. This model would work in partnership with the
state and in collaboration with other local agencies... [JAFCO website]
Their newest social "start-up", ICAN provides material support for a range of Israeli organizations that address child-focused needs. They include hunger and malnutrition, child abuse, housing, inadequate medical care, lack of educational opportunities and the chronic lack of services for children with disabilities. 

But part of their mission at ICAN, no less than the funding aspect, is in the raising of awareness among Americans about the state of children’s welfare in Israel. That's something we can appreciate and very much respect.

Deni and Ron Simon are hosted at Malki Foundation
office in Jerusalem by Debbie Fishman (Exec Dir) and Arnold Roth (Chair)
In a meeting at our office in Jerusalem this week, Ron referred to a belief among many American Jews that Israeli children with special needs get everything they could want via the Israeli government. That's of course a rosey view of reality and can lead to serious misunderstanding. The work of the Malki Foundation and many other similar-minded not-for-profits testifies to the broad scale of what is unfortunately not being adequately addressed.

We found a striking Ron quote elsewhere on the Web, and want to convey his words here:
The care of abused and neglected children is not charity; it is our responsibility to care for these children as a Jewish parent cares for their own children – with joy and pride. [Ron Simon]
Anyone surprised to know that at the Malki Foundation, we feel truly honored to have become part of the ICAN world? 

We look forward to an ongoing close collaboration with the Simons and their colleagues to help deliver services and support for children with disabilities and those who love them.

Thursday, May 4, 2017

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.

Tuesday, April 4, 2017

A special evening, a special singer, a special song

The 2017 edition of the Malki Foundation's annual Rainbow of Music concert in Jerusalem has come and gone - and what a fabulous success it has been!

As in past years, every seat in the Rebecca Crown Auditorium at the Jerusalem Theatre sold out ahead of the concert night - even if a few seats remained empty because kind supporters bought the reserved seat tickets even if they were unable to personally come along.

The three featured performers all came with superlative reputations and without exception did themselves and us proud. Our sincere thanks and appreciation for their wholehearted and musically-rewarding participation to guitarist-and-singer Shlomo Katz, to Cantor Tzvi Weiss and to Daniel Zamir, one of the bright stars in Israel's jazz firmament and a saxophonist of international renown.

Our friends know that the anchor talent each year for all of the Rainbow of Music events has been the versatile and rousing Ramatayim Mens Choir under the baton of Richard Shavei-Tzion whose broad-ranging talents include preparing the arrangements, finding the talent and crafting a balanced programme for the show.

The enthusiastic applause, the singing and humming along, the smiles on the faces of patrons as they left the theatre after the last encore - all testified to another job terrifically well done. The men of the choir perform as volunteers and do wonderful work for other charities as well as for the Malki Foundation. We salute their generosity of spirit and the harmony (in every sense of the word) they bring to the evening.


Now a word about one of the special stars of the night.

Entirely unannounced, Naftali Weiss, a young Jerusalem man of 24, sang Malki’s Song, otherwise known as Shir Lismoach, a song about joy. Malki Roth wrote the words and music of the song shortly before she was murdered and without ever saying anything about its existence to her family - they only learned about it after she was gone. (There's more background and detail here and here.) It has been recorded by professional artists on several continents and taught to children in Jewish youth groups throughout the world.

Naftali deals with the challenges of having autism. His mother relates how music and singing are a gift for him. He puts his whole self into music, is the way we heard it. For the team at the Malki Foundation, it was a special honor and source of pride for us that Naftali chose to accept the invitation to sing at our event. In Debbie Fishman's incisive words, "What a tribute to Malki who dedicated her short life to inclusion and caring for children with special needs!" (Debbie is the Malki Foundation's indefatigable executive director.)

Here's the video clip. Enjoy!


Aren't you glad you clicked?

Thursday, March 16, 2017

On Thursday March 16, 2017, your purchases at Amazon will help the Malki Foundation meaningfully!


If you were planning some online shopping this week, we have some good news.

Amazon is celebrating its #1 ranking in customer satisfaction by the American Customer Satisfaction Index!

Today, March 16, only, Amazon is going to donate 5% (that's 10 times the usual donation rate) of the price of your eligible AmazonSmile purchases to American Friends of Keren Malki.

Get started by clicking here: smile.amazon.com/ch/26-2251751

Thursday, February 9, 2017

Will you run with the Malki Foundation in next month's Jerusalem Marathon?


Israel's capital plays host to the Seventh Annual Jerusalem Marathon on Friday morning, March 17, 2017. This year, for the first time, the Malki Foundation is entering our own official Jerusalem Marathon team.

And we would love to include you! This can happen in one or both of two distinctive ways.
  • You might be willing to join our team and run. Or walk. 
  • Or you could consider sponsoring a runner or a walker who will be taking part as a member of the authorized, official inaugural Malki Foundation Jerusalem Marathon running/walking crew.
Either way, the bottom line is you become part of a wonderful effort that delivers unique support for children in Israel with severe disabilities.

Whether we're talking of the full marathon, the half marathon, the 5 km race or the 1.7 km family race (see all the details here), a fun day is guaranteed. Depending on which option you choose, the course begins at Israel's parliament, passes through Mount Scopus and the Old City, and finishes at Sacher Park. It's a spectacular route that challenges participants while exposing them to magnificent vistas and Jerusalem's unique atmosphere, culture and people.

The March date generally ensures comfortable weather, low humidity and an enthusiastic crowd of spectators.

And did we mention that you will be part of a team supporting children with severe disabilities in Israel, and their families?

Please contact us at events@kerenmalki.org for more information. Your application needs to be with us by 12 noon (Israel time) on February 20, 2017.