The Hold My Hand Foundation in Pécs has been supporting adults with intellectual disabilities since 1991. Its goal is to provide assistance that nurtures independence while upholding human dignity. Gitta Szvacsekné Jahn explained how this is achieved.
The idea behind the Hold My Hand Foundation
Whenever she returns to the daycare center, to this day she is greeted by the Youngsters’ beaming eyes and their loud cries of “Hi, Gitta!”
Gitta refers to herself not as a founder, but rather as the initiator of the idea. She began her career as a teacher, then in the late 1980s took on volunteer work in the field of elder care. It was during this period that she first experienced institutional coldness and later discovered similar inadequacies in the care provided to young people with disabilities.
Akkoriban a rendszert a nagylétszámú állami intézmények uralták, és sok szülőben merült fel a kérdés: „Mi lesz, amikor a gyermekem befejezi az iskolát?” – Ez a tapasztalat hatással volt Gitta kialakuló szemléletmódjára: „szakmai szempontból mindig azt mondtuk: ameddig lehet, maradjon a Fiatal családi közegben. Ha pedig felnőtté válik, a szakembernek, pedagógusnak a szülővel együtt kell segíteni a leválást, a felnőtté válást.”
Building on this idea, they launched the foundation in 1991 together with a few parents and professionals.Célunk az volt, hogy a tömeges állami ellátással ellentétben emberközpontú, személyre szabott támogatást nyújtsunk.”
In view of this, the structure of the emerging community was guided by the principle that Youngsters come first, followed by parents, and only then professionals – all working together as equal partners.
The first steps with the Youngsters
To put this approach into practice, the team of founders began working with the Youngsters – focusing on questions such as: “Who am I? What is my dream? What do I want?”– The Youngsters picked up this way of thinking quite easily, but the process was more difficult for the parents; they were used to a different mindset.
This partnership and the Youngsters' growing sense of self-awareness led to conflicts with their parents, who often disputed the foundation’s approach. Over the years, they had become accustomed to the idea that, because their child had a disability, they had to take the lead: not only to care for them, but also to make decisions on their behalf. The foundation’s professionals, however, wanted “the Youngster to be raised to be independent.”
Gitta says that, in the end, they were “tamed” through the Youngsters, but at first the parents experienced mixed emotions. On the one hand, they were happy to see their child developing, and grateful that they could know they were in a supportive environment while they focused on their work. At the same time, however, they were also protective of their child, and in many cases experienced it as resistance when the Youngster no longer needed their constant guidance. This became especially visible in everyday situations involving routine decisions: “we taught them that, even if it made the process a little slower, we should allow the Youngster to decide for themselves what clothes to wear or when to get up.”
To help parents process the difficulties that come with their child becoming an adult, Gitta and her colleagues organized conferences for them. Over time, not only the Youngsters and professionals, but the parents’ own development also became visible: “little by little, they reached a point where letting go of their disabled child became less painful.” Gitta emphasizes that the trauma an average parent experiences when letting go of their adult child “never truly disappears in the case of parents raising a disabled child. Parents are often even more vulnerable than the Youngsters themselves.”.”
“School for Parents”
The founding team’s goal was for the Youngsters to feel valued, while the parents would learn to accept that their child with disabilities was no longer a child anymore.
Gitta believes that, partly due to a shortage of professionals, the field pays far too little attention to parents, who, in her view, “deserve much more positive reinforcement, even from the state,” considering the difficulties that come with their situation.
„“They carry this burden for decades. It can be eased, but later in life, as the parent retires, they often relive the experience of exclusion: they no longer go to work, they have fewer community connections, and because of this, it becomes even harder to let go of their ‘child.’””
Continuous learning also plays an important role – not only for the Youngsters, but for the parents as well: “they reinterpret their role, their love, and the ways in which they can support, rather than restrict, their adult child.”
If she could start over, Gitta says she would involve parents more deeply in the life of the foundation, in the form of a kind of “school for parents,” through which she would want “not to raise them, but rather to accompany them.” ” She imagines something “dynamic, alive, and genuinely helpful in processing everyday life.”
Independence, Responsibility, Diversity
As the foundation’s operations became more established, “the world changed as well. In the 2000s, more and more supported independent living homes were created” – and the Hold My Hand Foundation was among the first to join this movement.
The essence of supported housing is that the Youngster can live independently and only receives assistance when needed. This does not mean constant daily supervision, but rather support that is available at any time. “It was an enormous step toward independence, but also a difficult one, because the right to make decisions belongs to the Youngster, while the ultimate responsibility always falls on the helpers. Finding the balance between these two things – freedom and responsibility – is one of the greatest challenges in this field.”
Alongside the process of becoming independent, Gitta believes that another key to development is helping the Youngster recognize that they are not the only one facing difficulties – everyone struggles with something. “I also revealed my own weaknesses to them, and together we learned that it is completely normal that we are different. This remains the foundation’s philosophy to this day. The goal was always to build on strengths, but without going too far in the other direction: there should be no positive discrimination either. The essence is balance and maintaining partnership.”
“Not a Profession, but a Calling”
By now, the foundation’s team has grown into a close-knit community. They regularly organize shared events – cooking gatherings, excursions, holiday celebrations – where the Youngsters, parents, and professionals can all spend time together.
For Gitta, it brings great joy that she has remained connected not only to the Youngsters, but also to the foundation’s leadership and staff: “sometimes I can still offer them a perspective that helps in their work. I worked here for twenty-seven years, and many things have changed since then, but that is not a problem – communities usually develop in waves. I always felt that this was not simply a profession, but a calling. I think that is why I was able to stay in it for so many years; because every single day gave me some kind of joy, something new. Even when it was difficult, I never experienced it as a burden.”
She believes that one of the most important things in this work is learning that “the role of the helper is not to solve life in place of another person, but to create space for them – space for mistakes, for decisions, for growth.” In her view, development is ultimately made possible not by abilities alone, but by a safe and accepting environment.
“Now, when I look back, I see that what truly matters is human connection. Not the institution, not the system, but the moment when someone smiles at you, holds your hand, or simply sits beside you and listens. These are the moments that carry people forward. This is what we always tried to preserve. Even the name ‘Hold My Hand’ (Fogd A Kezem) was not accidental. It does not mean ‘I will lead you,’ but rather ‘I am here beside you.’ If needed, I will help – but if you are able to walk on your own, I will let go of your hand.”
As she recalls memories connected to the foundation’s history, one story comes to mind: “once, a Youngster named Gergő, who barely spoke, came up to me after a week and simply said: ‘I like being here.’ And I knew that was enough. No further feedback was needed. That is why it is worth doing this.”