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The challenges facing a family with a seriously disabled child
are not simple. Neurological disorders, severe illness and developmental
problems in childhood change the lives of all concerned: the child, the parents,
the siblings and - in some ways - the society around them.
Experience shows that such families are rarely in a position to
stand up to these challenges without sustained, targeted help.
In Israel, sadly, the government is part of the problem rather
than part of the solution. That is where our role starts.
The Malki Foundation (Keren Malki in
Hebrew) was founded
in 2001 as a living memorial to a girl who
dedicated herself to caring for people with disabilities, among them her own
severely disabled sister.
The life of Malka Chana Roth, who
was fifteen when her life was snuffed out by Arab
terrorists, is the inspiration for the foundation’s work. Her murder is the
reason it was created.
Two Programs
Keren Malki’s work is channeled into two
active programs: one focused on providing specialized equipment in the home, and
the other on home-based therapies. In both tracks, the goal is to empower
families who want to give their seriously disabled child the best possible care
at home.
Most families benefiting from Keren Malki’s programs first learn
about them by word of mouth: via a social worker or from their child’s
neurologist or therapist. The number of families admitted to the program
currently stands at several hundred; the numbers are growing steadily. Fresh
applications arrive at the rate of some thirty a month.
Keren Malki’s limited but growing financial resources dictate
that we move forward very carefully, taking the trouble to clearly define goals
and manage expenditure conservatively.
Program #1:
Providing therapies in the home
The innovative Keren Malki
Right to Nurture Program was launched in 2003. It is based on the
principle that striving to meet the needs of a seriously disabled child requires
all the love and care the family can muster… and as much paramedical therapy
support as they can afford. The cost of therapies, and finding the money to fund
it, is a major factor in the lives of such families. Schools, both special
purpose and mainstream, provide some therapies, but never enough.
The message from Keren Malki to parents coping with these major
challenges is: You find the therapists who can best help you child, and we will
help you cover the costs.
But Keren Malki's Right to Nurture
program comes with conditions: families must first make full use of the
therapies to which the child is currently entitled under the law. Once they have
worked through the system and obtained what is available there, our role begins.
Keren Malki’s founders, Frimet and Arnold Roth, have had their
own battles with the public health bureaucracy over the past decade. (The
youngest of the Roth children suffers from blindness and other extreme
disabilities.) Their experience is a significant factor in moulding the
foundation’s direction and policies.
Applicant families admitted to our
Right to Nurture program receive financial support for any one or all of
the following: physiotherapy, occupational therapy, therapeutic swimming, speech
therapy and therapeutic horse-riding.
To qualify for Keren Malki support, the child needs to be
diagnosed as having a significant disability, and must reside in the family home
rather than in an institution. This is a fundamental issue for us. Many large
and fine institutions for the disabled operate in Israel. The guiding principle
in Keren Malki’s work, however, is that we support and empower parents who want
their child to continue living at home.
Unfortunately there are very few Israeli organizations which
promote this view, something we hope will change with time. The first step for
families wanting to join the Therapies in the Home program is to make contact
with an organization called Kesher
whose formal name explains what it does: “Kesher: Information, Counseling and
Support Center for Families of Children with Special Needs”.
Founded in 1993, Kesher’s experienced team of social workers
serves as a clearing house of vital information about families’ rights and
benefits.
Since we established our partnership with them in 2003, Kesher
has provided a desk and office facilities for Keren Malki’s full-time
case-manager. The Kesher team, headed by the indefatigable Maya Goldman who
founded the organization, answers calls on Keren Malki’s behalf, advises
applicant parents on Keren Malki’s work and begins the process of qualifying
them.
The rules of the Right to Nurture program require that
families seeking admission furnish a letter from a medical specialist certifying
that the child has a significant disability. A simple questionnaire is filled in
by a parent and the modest set of papers is then considered at one of the weekly
meetings of Keren Malki’s acceptance committee.
Families admitted to the Right to
Nurture program receive reimbursement
(normally 75%) of the therapy costs against the receipts which they
supply.
The therapist providing the service must be a licensed
professional in his or her field under Israeli law; and the receipt for payment
must comply with the taxation authorities’ rules. As a matter of principle, we
will not reimburse therapies provided ‘off the books’ or by unlicensed
professionals.
Program #2:
Long-term access to vital equipment
In Keren Malki’s second program, formally
called the Keren Malki Unit at Yad Sarah,
we provide specialized equipment for the home: items that generally are either
unavailable in Israel from any other source, or prohibitively expensive.
The goal, as with the Right to
Nurture program, is to
empower and support families wanting to care for their special-needs child at
home, rather than to institutionalize the child. An Israel-wide network of
volunteers aiding disabled, elderly and house-bound people, the Yad Sarah
organization has for years been devoted to making home-care an option. It has
gained a well-deserved international reputation for the excellence of its
performance.
Since establishing our
joint venture with Yad Sarah in
January 2003, we have had the privilege of providing home-care beds, standers,
walkers, bath-inserts, hoists and host of other items to households where a
seriously disabled child is cared for. Keren Malki's warehouse at Yad Sarah has served
hundreds of families from all parts of the country and from all demographic
segments of Israeli society. More than 450 such equipment items had been
delivered to those families by June 2005. All equipment is provided at no charge
to the family. Repairs and maintenance are also free.
Steady Growth
When we began supplying equipment for home
care, we had a general sense of the kinds of equipment needed, and not much idea
of how quickly the demand from families would materialize and grow.
Five years later, it is apparent to Yad Sarah’s
management and volunteers and to Keren Malki – and to anyone who watches the
steady flow of expensive equipment being taken home by grateful borrowers – what
a valuable service we provide. The faces say it all.
Our equipment includes about thirty different classes of item;
some are in greater demand than others. Our specialty focus makes us one of the
largest purchasers in the world for certain kinds of aids and therapeutic
equipment.
The degree to which the Malki Foundation’s work will succeed is
directly related to how well we are able to maximize the effectiveness of money
raised from donors. This, in turn, requires minimizing our expenditure of time
and money on infrastructure and overheads. We have a lean management team – one
administrator, and one case manager. We have no other salaried personnel, no
fund-raisers who earn commissions or any other payment, no cars, no waste. A
small group of committed volunteers, including Frimet and Arnold Roth,
contribute their time without payment, providing all the additional manpower we
currently need to do our work including the raising of donation money.
Keren Malki’s financial accounts are professionally prepared and
audited, and the organization is registered with the Israeli authorities as a
not-for-profit (an Amuta). The donations we raise outside of Israel are
channeled via Friends of Keren Malki voluntary groups in Germany, the US and
Australia, and are transferred to Israel with no deduction and no expenses.
Keren Malki’s sharp focus and lean structure should never be
confused with amateurism. In our quiet way, we have already reached many hundreds of
Israeli families, and with your help we will reach hundreds more this year.
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