MONTREAL — An early intervention (EI) program with roots in a small chassidic community that claims to have achieved miracles with developmentally delayed children is the focus of a McGill University study.
The education faculty’s department of educational and counselling psychology and the Yaldei Developmental Centre are partners in a project to determine what works in intensive EI programs. The academics want to know why Yaldei has been so successful.
The results of the three-year study may have a national impact on practices in this field and on policy-makers as provincial governments assess funding for these costly therapies.
The researchers, led by professor Ingrid Sladeczek, are trying to develop an empirically based protocol for the screening and diagnosis, and for evaluating the efficacy of EI. Experts from the fields of medicine, psychology, social work, speech, occupational and physio therapies from around the world are being consulted.
Yaldei is being used as the model, and its services and outcomes are being compared to those of other EI centres in Quebec, Ontario, Alberta and British Columbia, both private – like Yaldei – and government-supported. A report on the findings will ultimately be presented to the health minister in each province.
EI can begin when an infant is just a few months old, as it does at Yaldei, and may continue up to nine years of age. Evidence indicates that the earlier the intervention, the more effective it is. The argument for more public funding for early intervention is that these children will need fewer special education or rehabilitative services later on – and thus cost the public less over their lifetime.
The study’s results may provide the scientific validation for legal claims some parents have made that it is discriminatory not to provide scientific treatment to a certain group of people – in this case young children, with developmental delays or autism and related disorders.
EI is expensive because it is so labour intensive and requires many hours over possibly years. In Yaldei’s case, the intervention is one-on-one, and children may spend 25 to 30 hours a week at the centre, which is located in the Queen Elizabeth Health Complex.
The courts have overwhelmingly upheld the claims for more public support, but governments have been slow to act because there is still debate over what are appropriate services for developmentally delayed children. The provinces currently vary widely in their support of EI programs. In British Columbia a third of the costs are covered until the child is six. “Quebec funds some therapies but services are fragmented and wait lists are long,” she said. Alberta, Ontario and Prince Edward Island cover some costs.
By the end of the project, the McGill researchers hope to be able to identify which types of intervention are best suited for a particular child and his family, which will serve as a protocol for professionals across the country.
The project is funded by the Calgary-based Max Bell Foundation.
Yaldei (which means children in Hebrew) provides a range of professional, multidisciplinary services for children with developmental, and often physical or medical problems as well, from as early as three months old. In addition to the on-site program, Yaldei also offers services at home and at school. Its staff follows children in more than 25 schools. During 2007, it helped a total of about 140 kids.
Its staff includes physiotherapists, occupational therapists, speech, music and massage therapists, as well as a corps of volunteers. In recent years, it has also run a sleep-away summer camp in rented facilities.
Yaldei takes on some of the toughest cases, including children who cannot walk or talk, and toddlers who can’t crawl or sit up, or even chew or swallow. A couple of current clients are being fed by a gastric tube. One little girl has so little use of her hands, that she sends commands to her computer by leaning her head to one side to press a button.
Yaldei has come a long way in its 10 years. It was founded by Menachem Leifer, a member of the very insular Tash sect in Boisbriand, north of Montreal. Two of his children had developmental delays and he was frustrated by the lack of services.
Yaldei began in a small bungalow with a few children from the Tash community and a handful of therapists. Even a decade ago, EI programs were extremely scarce in Quebec and there was skepticism about their effectiveness. Yaldei initially modelled itself on a program in the Orthodox Jewish community in New York.
The demand for Yaldei’s services grew, and within a few years it relocated to Montreal. About six years ago, it moved into its present quarters in the Queen Elizabeth complex. Leifer continues to serve as its executive director.
Although it receives very little government funding, its services today are offered on a non-sectarian basis. Yaldei charges parents what they can afford, and relies heavily on private fundraising.
One of its most generous supporters has been the Donald Berman Foundation, and recently the centre was officially renamed The Donald Berman Yaldei Developmental Centre, in memory of the late benefactor whose estate supports a number of programs for disadvantaged kids.
Yaldei has received a strong endorsement from Eric Fombonne, head of child psychiatry at McGill and at the Montreal Children’s Hospital, who has an international reputation as an authority on autism.
In a video shown at the renaming ceremony, Fombonne called Yaldei’s services a “template” for what all affected children should be receiving.
Yaldei has always strived to provide a warm, supportive environment for its clients. Its philosophy is to “focus on the abilities, rather than disabilities, of the child which allows them to learn at their own pace.”
Leifer said everyone at Yaldei is guided by the belief that each child was “put on earth for a reason, their lives are precious, and they should have the opportunity to reach their potential.”
The centre has 12 different treatment rooms including the various therapies, a computer lab, and a sensory integration room, which is especially popular.
In this darkened room, kids can watch bubbles rising in a glass cylinder, see fibre optics change colours or immerse themselves in a tub of plastic balls.
The video highlighted the case of a boy who has cerebral palsy. He came to Yaldei at 18 months, having not yet taken his first steps or spoken. At 21/2 he is now considered to have reached a normal development and is attending a regular pre-school. Another little girl who at two could not sit up unassisted, took her first steps at six. Now she loves running.
The new plaque in Yaldei’s lobby reads: “With each child’s first step; with each child’s first smile, Donald Berman’s legacy will live on.”
Foundation trustee Neil Stein said it is a fitting tribute to Berman, a bachelor who lived a quiet life and sought no honours.