More must be done for kids with disabilities

Original article from the Israel Hayom Newsletter on Monday February 25, 2013. By Miriam Avraham and Beth Steinberg.

February is Jewish Disabilities Awareness Month, a time when Jews around the world come together publicly to raise awareness and support for people with disabilities and their families. In Israel as well as worldwide, families and children are isolated and marginalized by disability; in their synagogues, schools, neighborhoods and workplaces. Fear, inadequate education, as well as a lack of meaningful opportunities for integration, prevent understanding and connection between people, an effort which must begin in childhood.

For Israeli families coping with disability, February is an anxious month as the lengthy Passover vacation looms only a few weeks away. Parents are faced with an impossible situation — close to three weeks of school vacation, with limited or no programs available for kids with special needs who can’t be left alone at home to cope like their typically developing peers.

And it’s not just during Passover vacation that this issue complicates the lives of families. Children and teens with special needs are in need of quality informal education programs year-round, especially during longer school vacations.

Who gets needed services in this country? Children with more significant disabilities benefit from longer school days and shorter school vacations but there’s a whole population of children and teens with special needs, many of whom are educated in special education frameworks, who are considered less needy by the Ministry of Education and the Ministry of Welfare. This population often lacks traditional developmental labels to describe their needs — they receive fewer services and their school schedules are much like those of typically developing children. After school and camp programs meant for typical kids don’t work for this group, which requires a more structured environment and individualized attention.

The issue is further complicated by government funding resources that are determined per child and per disability, an approach that often precludes inclusion of any kind. It’s simply easier to keep kids segregated according to their disabilities — in school and in after-school programs. With this model in place, after school often consists of a class of kids who are bussed to a local community center, or provided with activities in the building where they spent most of their day, an approach that limits all children socially and developmentally.

The government’s approach to this population in need is short sighted and ultimately flawed. A planned and proper investment of time and resources, along with a thoughtful informal education response for these kids and teens would help ensure their future success as capable adults in the greater society.

It is time that the Israeli educational system recognize the need and value for quality, informal education programs, a goal that will serve everyone — children with special needs along with their typically developing peers. The vast majority of existing informal education programs in Israel for children are unprofessional, often staffed by teens with limited training and mentorship, with a high camper-to-staff ratio. As for programs for children with special needs, the educational approach is far from therapeutic; in fact, it’s not much more than babysitting. Sadly, a huge educational opportunity is being missed.

This is not just Israel’s problem. Today, every country worldwide is challenged by the question of how to best meet the needs of people with disabilities. It’s time that the government and the greater community remember to include those members with special needs, as well as to provide quality services that promote mutual respect and understanding between all people.

The Jewish approach to disabilities has always been compassionate, although not always enlightened, held back by the push for success especially in modern times. As Passover approaches, let’s recall that the Jewish people’s most important leader, Moses, had a speech impediment, a special need that he felt cowed by when accepting the yoke of leadership.

Diversity is the key to a healthy, strong and just society. Let’s all join together and make it happen today.

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Where’s the money for all people with disabilities?

The original Op-ed appeared on March 27th, 2013 at 18:33  in the “Israel Opinion” section of Ynetnews.com. By Beth Steinberg, Miriam Avraham.

JTA editor’s pick on March 29th. Translated into Hebrew on Haaretz.

Ministers must show they believe in the right of people with disabilities to excellent services, dignified lives

Listen up, Bibi, Yair, Shai, and Naftali. Autism isn’t the only disability in need of attention. Will 2013 be the year that the Israeli government puts the needs of all people with disabilities front and center – men, women, children, and their families – who deal with disability; cognitive, physical, emotional, each and every day?

Will new government officials and the funding bodies they represent, the Ministries of Finance, Education, Welfare and Health, be willing to admit that Autism is only one in a long list of disabilities in need of proper attention?

Autism has become the label of the moment – the cause célèbre, if you will – in the world of disability, pushing aside the needs of all people, children in particular, with other developmental disabilities. It’s an inequity that has caused a growing need in many an overburdened municipality such as Jerusalem, a city that lacks the funds to properly handle educating and supporting the growing numbers of children diagnosed with a range of learning issues that include Autism spectrum disorder, as well as other developmental challenges. That means quality programs, including school, after school, and day camps during longer vacation periods for all children and teens.

Parents have proved to be a powerful force in the world of Autism, in Israel, as in the rest of the world, lobbying, demanding and receiving specialized classrooms within general education schools as well as longer school days, and a school vacation schedule that is much more comprehensive year-round than children with cognitive disabilities, severe learning problems, and emotional/behavioral issues receive.

Furthermore, many of the specialized programs for students with Autism are held in general education facilities, giving those children opportunities for inclusion alongside their typical peers that is rarely offered to children with cognitive and physical disabilities.

Social services programs such as the National Welfare Institute, Bituach Leumi, which assesses and offers monthly stipends to children with known and identified labels, gives the full 100% of the monthly allotment allowed to children with Autism, regardless of their independent living skills and overall cognitive issues, compared to their peers with known cognitive labels, such as Down syndrome, for example, who generally receive 50% of the full monthly grant.

Children with disabilities that are not as easy to label often receive nothing, even though they may be enrolled in special education schools and have needs are no less complicated. Without that all important access to government funds that parents and caregivers use for therapies and equipment not covered by government health services, most are left high and dry unless their families have the extra funds on hand – most don’t.

They were elected to lead

Reassessing how government agencies divvy up people with disabilities in order to provide support services is critical if all are to have equal access to the help they need. Currently, the three available designations, Autism, cognitive disability and rehabilitation (an all-inclusive label that truly means nothing), create barriers that limit access to a range of programs both social, educational and vocational, for adults as well as children.

Two weeks before the recent election, Prime Minister Netanyahu said that his government would put together a “special plan” for dealing with people with Autism. Yair Lapid’s Yesh Atid party, made Autism funding a critical part of the deal they cut before entering the coalition, something that many would describe as sector-based legislation, an old-style way of doing politics that many would like to see ended.

While it’s great to see attention paid, and monies apportioned, why just Autism? What about the thousands of Israeli adults and children with other disabilities? Since when did their needs become any less important than others, and what kind of message are we sending to them and their families, as well as the greater society, who still needs to be encouraged to include and not to fear people with disabilities?

No parent struggling with disability would argue the need for school services, quality afterschool activities and appropriate vacation programs but it is unclear why so much has been given to one population in need.

It is well known that a number of our governmental leaders have family members with disabilities. We applaud those who’ve talked about it honestly and we respect those who’ve chosen to protect their family members. But the time has come to act.

We demand that Israeli leaders put the needs of all Israeli citizens with disabilities on their platforms. A leadership opportunity exists for that person and party who stands up and makes the issue their own, encouraging the removal of stigmas and barriers as well as finding the necessary funds to help all people with disabilities. They were elected to lead – morally and legislatively – and not shy away from difficult issues such as disabilities. They were elected to take a stand, to inspire and to lead by example – the best and only way to make a difference.

Ministers, set an example. Show that you care about ALL people with disabilities. Show that you believe in their rights to excellent services and to a life lived with dignity.

It’s time. It’s time for all Israeli leaders to publicly and unequivocally pledge their commitment to all Israelis, and to include them in the greater society. Not because we pity them but because they have equal and inalienable rights, regardless of difference.

A leadership that is able to harness the energy of the government, non-profit sector and public to ensure fairness of resource distribution and opportunities will make Israel a better place for all, and a light unto nations around the world – imagine that.