Giving Poland's "Special"
Children a Second Chance
By Steve Owad
Six-year-old Lukasz Rubacha's bedroom looks like a cross between an obstacle course and a playground. A detachable swing hangs from the ceiling, a rope-and-wood ladder lines the wall, and the closet and dressers are crammed with toys, picture books and a semi-circle of wood that a circus clown might balance on while juggling.
Lukasz's parents – Krzysztof and Grazyna – feel lucky to have to deal with the mishmash. Lukasz, who has cerebral palsy, once spent his days in a rundown, understaffed state institute, and evenings with parents who were
then unskilled in how to treat his uncontrollable muscle movements and unsteady balance.
They now use the bedroom clutter to work with him on everything from walking and balancing, to reading and even using a computer – things the state institutes would not teach them. "He can't close his thumb to his forefinger," says Grazyna, "but now we know we can give him special 'thick books' and markers for reading and writing."
To keep his muscles from deteriorating, Grazyna now gives him massages. The rope ladder in his room, used in a walking exercise, has increased his mobility. Just as important, he now spends more time with his parents.
Sixty thousand children (in a country of 38 million) suffer from cerebral palsy, but the Rubachas are one of only 300 families who receive training and funding to care for them at home. In 1997, the Rubachas joined the home-care program run by the Create a Chance Foundation for the Development of Children with Cerebral Palsy (despite its name, the foundation also works with families of children with autism and Down syndrome).
With four out of 1,000 Poles suffering some form of brain damage, and 40 percent of that number being afflicted by cerebral palsy, Create a Chance is a new option for parents who want to bypass ineffective state institutes and cannot afford the country's few private care-givers.
In the Wilderness, a Ray of Light Shines Bright
Grazyna first heard about Create a Chance three years ago. Based in the central-Polish city of Torun, the foundation was training mothers not only to care for their children, but also to earn some money while doing it.
"The institutes here in Warsaw," she says, "all had programs for Lukasz's body, but nothing for his intellect and no advice for us as parents. Create a Chance taught us how to care for him."
That "care" is both therapeutic and financial. Create a Chance helps its 300 member families find sponsorship money, reimburses them for medicine, training materials and home-care equipment, and subsidizes post-secondary studies in related fields such as physiotherapy. Spin-off groups have sprung up in several cities, and the cash-strapped state healthcare system is now saving money on children who no longer attend public institutes.
All of this occurs in a country with no tradition of qualified home care. "Back when I studied medicine," says psychiatrist Krzysztof Liszcz (pronounced LEESHCH), "we didn't even study children with cerebral palsy or autism."
Krzysztof Liszcz (left) going through daily exercises with parents and child at the Create a Chance Foundation
Liszcz founded Create a Chance in 1993. A bear of a man with a soft voice and an avuncular manner, he worked as an army doctor until 1981, when he was discharged for opposing communism.
Under the communists, he says, a brain disorder was like a life-long jail sentence: "It was assumed that these were sicknesses you couldn't do anything about." Children were institutionalized. Treatment meant little more than supervision. Parents were told that their children's conditions would not improve.
The arrival of democracy in 1989 brought no revolution to that thinking. Underfunded state institutes still offer patients little more than piecemeal physiotherapy.
"Hospitals and institutes exclude the parents from a care process that should be a 24-hour thing," Liszcz said. "You can't have a few hours for rehabilitation and then some free time. A brain disorder is there 24 hours a day, seven days a week."
The Need for a 24-Hour Cycle of Caring
He should know. After a visit to an orphanage for children with brain disorders in 1989, he adopted Kasia, a two-year-old with cerebral palsy.
"She had an IQ of 19," he said. "She would have spent her whole life at a 'special home' and that would have been that."
So he sought information in Torun about how he and his wife Katarzyna could raise Kasia at home. He found none.
Krzysztof Liszcz (left) with a family visiting the Create a Chance Foundation
At the time, Liszcz was working out of a municipal office, running a self-help program for families of alcoholics. He assigned himself the added task of helping families of children with brain disorders. The stay-at-home mothers needed income; the children needed well-rounded care programs.
A few phone calls to the Institute for the Achievement of Human Potential in Philadelphia produced an invitation to a two-week home-care course in the United States. The Liszczs and four other Torun families of children with cerebral palsy scraped together travel money from local businesses and made follow-up trips to both Philadelphia and the British Institute for Brain Injured Children in Summerset, England.
By 1993, 70 families had made trips to England under the aegis of the foundation. "Such travel was expensive," says Liszcz, "and meanwhile we still had nothing here."
To change that, the parents chipped in to have the Summerset institute train two Torun-area doctors in devising home-care programs. While the doctors were in England for two years, Liszcz and the parents continued raising money, this time to open a headquarters that would maintain individual accounts of each family's fundraising, and invited the Britons to visit the families in Torun.
A Unique Organization Comes into Existence
The fundraising involved writing letters and paying visits to potential donors. The City of Torun provided a rent-free, 800-square-meter building (a product of the trust Liszcz had established while running the alcoholism program), and Liszcz created a unique organizational structure.
The foundation's annual budget (it totaled roughly $200,000 in 1999) was created based on three equal sources: parents' sponsors, donors to the foundation, and the Polish health ministry, which provides refunds for physiotherapy, medicine and equipment.
"We have what we call a social community," Liszcz stressed. "Everyone has a responsibility to seek sponsorship, and each family has an 'account' with us. The families pay us a small annual fee (of roughly $7) and 5 percent of their sponsorship money."
In return, the foundation pays each of the families 180 zlotys per month (about $50, or one-fourth of the average take-home salary in Poland) and refunds purchases of everything, from therapy books to whirlpool baths. Every transaction is recorded, and the families' fees and 5 percent contributions are supposed to at least match their refunds and monthly disbursements.
The Rubachas found sponsorship from a national radio station. Other families find money among friends, family and local businesses.
Grazyna Rubacha and a volunteer (Julka, left) give Lukasz a massage
"If a family has a negative account, we find ways around that," Liszcz said. "If you've raised no sponsorship money and you owe us, say, 500 zlotys, I'll ask you to pay a percentage of that and to show me 50 letters to potential sponsors. Sometimes I'll simply have to agree to look for sponsorship for you, but you have to at least try. We don't want to merely provide social welfare."
The foundation raises as much money as the parents do, but every zloty is a hard-fought battle. Twice a year Liszcz travels to every Polish province to meet with local governments.
"For every 100 meetings I hold with local governments, only four produce any money or equipment," he said. The private sector and non-profit social organizations, such as the Stefan Batorego Foundation, pick up the slack.
Every weekday morning Liszcz signs 500 letters to potential sponsors, most of them in Poland. To help cut postal costs, many letters are hand-delivered by families and volunteers.
The list of donors is in constant flux, but fundraising has gone well enough to equip the foundation with an array of rehabilitation equipment and the only bookshop in Poland for parents of children with brain disorders. The foundation's staff of 20 includes one full-time employee (an administrative director and fundraiser), two part-time doctors and bookkeepers, and a dozen volunteer therapists and caregivers.
Homeward Bound!
None of which means much unless the parents have a practical care program that they can use at home. The know-how from Summerset has enabled the foundation to work with families from outside Torun.
"To be a part of the program, we first had to attend a three-day home-care course in Torun without our son," Grazyna said. "Then we had to come home to Warsaw, develop our own daily care schedule based on their guidelines, and return several months later to show them what we'd come up with."
The Rubachas going through a balance/coordination exercise
"Because every child has different needs," Liszcz adds, "we have this waiting period so that the parents can modify the program to suit their particular child – and also so that they can see if they want to stick to the plan." (As the children's afflictions range from mild motor-function disabilities to severe physical and mental disabilities, some parents need more comprehensive care programs and in-home equipment.)
On the return visit to Torun, the Rubachas brought Liszcz a 40-minute video of them running through their daily exercises and a report detailing Lukasz's progress. "What we do then is assess both the child and the parents' program," Liszcz says. "We hone the program together."
A typical daily home-care schedule involves three or four cycles of walking and balancing exercises, therapeutic massages, reading/picture-identification drills and an "emotional calendar" upon which the child draws pictures to express feelings. For most of the children, sandwiched in-between are morning or afternoon classes at integrative pre-schools, to provide contact with other children. The foundation gives every family a "development profile" that helps them gauge the child's progress in areas such as sight, hearing and motor function.
"The good thing about running our program ourselves is that we can be flexible," Grazyna said. "The foundation wrote to us saying we should add a 'balance swing' to our schedule. We wrote back saying we'd already rigged one up."
Intense personal connection with family is the home-care method's critical ingredient
Learning the various exercises and massage techniques was a matter of repetition and consultation with foundation staff. Once in the program, parents mail the institute video presentations and reports every three months to give the foundation an idea of their progress. The foundation refunds travel costs for annual "check-up" visits in Torun, and once a year, a doctor or therapist makes a home visit to everyone in the program.
For the doctors and therapists in Torun, there are short, biannual refresher courses to ensure that everyone sticks to the methodology. About half of the parents drop out during the waiting period after the initial consultation. Another 5 percent leave every year.
"This isn't for everyone," Liszcz points out. "It's very difficult to care for a child day and night." Some mothers have dropped out under the stress of round-the-clock care, and others have opted to start their own groups, independent of foundation control – but also without the financial benefits.
Balancing the Books to Make the Idea Work
Money problems also render Create a Chance impractical for some families. Single mothers need to earn more money than the foundation can offer. Many households need the mother to work a higher-paying job to help make ends meet.
Liszcz admits that Create a Chance cannot help everyone. He says, "We're merely a new option for parents who want to raise their children themselves," adding that 60 percent of the children in the program show clear development (in areas such as motor function and responsiveness), 20 percent show marginal development, and 20 percent show no improvement at all, which in itself is a success, as untreated children's conditions tend to worsen.
Liszcz argues that intense personal connection with family is the home-care method's critical ingredient: "My Kasia develops better with her mother than she would at the most expensive school."
But providing round-the-clock care is still a tall order. The Create a Chance model would not work without bringing volunteers into the mix – plenty of volunteers.
"Each family cooperates with up to 20 volunteers each week," Liszcz said. The helpers, typically youths found through advertisements, schools and local volunteer organizations, each spend three to four hours a week with the mothers, running exercises and playing structured games with the children.
Grazyna Rubacha working on a balance/coordination exercise with Lukasz
"We (mothers) train our volunteers," Grazyna said. "Having them frees me up to do things like go shopping and pay bills."
Krzysztof Rubacha adds, "When we first started this program, the most difficult thing for us was to admit that we needed help. Today, we look forward to meeting Lukasz's various friends as much as he does." The Rubachas acknowledge, however, that keeping 20 volunteers in the weekly rotation is a constant struggle, especially when it comes to filling Saturday morning and vacation slots.
The Flip Side of the Coin: Not Everything's Smooth Sailing
In the seven years since it's inception, Create a Chance has encountered one major setback. In 1995, Liszcz started the Professional Mothers program. Fifty mothers attended training seminars in Torun and earned diplomas as "para-therapists," which enabled the foundation to put them on the payroll for caring for their children at home. The small monthly salaries they received ($50 beyond the rebates and monthly contributions to their accounts) gave them not only added income, but also free health insurance for themselves and their children and the right to state pensions after 20 years.
"It was a wonderful success," says Liszcz, "until the government cut the mothers' entitlements to insurance and pensions." A petition with 100,000 signatures failed to persuade the authorities in Warsaw to restore the entitlements, and Liszcz had to discontinue the program.
There are also day-to-day challenges. "Because we have mothers all over Poland, ensuring that every mother finds sponsors is difficult," Liszcz said. "Sometimes we just can't do it. It's easier in Torun, because that's where we have people on the spot."
Not that money flows freely to the headquarters. Apart from the endless letter writing and visits to businesses, Liszcz is forever seeking media coverage to attract donors and new member families. He also maintains strong contacts with foreign donors.
A volunteer with a child at the Create a Chance Foundation
The Stichting Kinderpostzels Nederland foundation funds the preliminary courses for mothers. Ashoka: Innovators for the Public provides Liszcz himself with a yearly income, and closer to home, the Ministry of Labor pays for therapists' annual home visits to families.
"We and our mothers have about 2,000 small funding sources and no big ones," Liszcz said. "It's what we have to do to remain self-sufficient."
Flexibility is also essential. Therapists and volunteers write educational booklets for the bookstore. The parents suggest amendments to the home-care programs.
When the budget wouldn't support the foundation's planned vehicle purchase, Liszcz found an NGO to cover part of the cost if he employed a partially disabled driver. When the Canadian embassy donated a specialized computer for children unable to use their fingers, there were no Polish-language programs on the market – so speech therapist Iwona Kaminski designed one herself and passed it on to 30 families.
"We are now one of only three places in Poland with such a computer program," Kaminska says, adding that the foundation has also refunded computer purchases for 21 families.
Jumping onto the Tried and Tested Bandwagon: Success Speaks for Itself
Create a Chance's continued existence, Liszcz says, hinges less on raising money and designing care programs than it does on winning trust from the families involved: "I've learned that mothers will only get involved if they have absolute faith and trust in the program. They have to know that this is their program, their source of support. They have to be partners in everything you do."
Like-minded people from outside Poland have taken notice. There are Create a Chance-style programs in England, the United States, Brazil and France, but Liszcz says the method is still new for countries closer to home.
"We've held seminars for therapists and mothers from Belarus and Ukraine, and after we invited 12 families from Lithuania (in 1997), they managed to start their own foundation in Vilnius," he said. "Within a decade, we'd like families here in Poland to start their own groups. We want them to take the initiative – for instance, to open and run a local care center, if that's what they want. My dream has always been to be a catalyst for people who help themselves."
If the programs are to work, the all-important ingredient will again be trust
In Poland, new associations have already started in Opole, Gdansk, Lublin and Katowice. Though the budding groups do not yet offer members the foundation's financial benefits, Liszcz notes that at least there is a drive to make strong home-care programs available to those who want it.
So, while raising money and training mothers, Liszcz looks ahead. The foundation is starting a program that should create jobs for unemployed nurses and mentally challenged youths who care for disabled elderly people.
Another program involves training children of alcoholics (who are more likely than the average Pole to suffer from mental illness and substance abuse) to work alongside the mothers of children with brain disorders. If the programs are to work, the all-important ingredient will again be trust. If the Rubachas' and the 300 other families' faith in Create a Chance is any indication, that trust is likely to come.
Needs:
Liszcz is searching for long-term foundation sponsors and sponsors for individual families. He would also like to hear from anyone interested in setting up a computerized movement-analysis laboratory in Poland.
|
August 2000 Journal Home Page