Category: Abstracts

8000 důvodů

Barbora Křižanová

Kolik dětí s postižením vyrůstá v rodinné péči a kolik v ústavech a jaká je situace v domovech pro osoby se zdravotním postižením? Co udělat s domovy pro děti do tří let? Co rodiče při péči o své děti nejvíce potřebují? Těchto témat se v krátkosti dotkne přednáška vycházející ze zkušeností, které Nadace J&T získala v rámci spolupráce s kraji.

Systém péče o děti s postižením v České republice zaznamenal od revoluce mnoho změn, proměnil se počet dětí v ústavní péči, vznikly nové služby. Přesto má systém stále svá omezení a rezervy. Jaké jsou limity a jaké změny jsou v systému potřeba?

V ústavní péči vyrůstá sice jen minimum děti s postižením, v mnoha případech ale v nevyhovujících podmínkách. Jak vypadá péče o děti v domovech pro osoby se zdravotním postižením a jak by mohla pobytová péče o děti s postižením vypadat? Co je transformace a na co se při ní nesmí zapomínat?

Jaká je budoucnost dětských domovů pro děti do tří let – legislativní změny platné od roku 2022 a chystaná novela – jaká je jejich aktuální naplněnost a jak by se tato zařízení měla transformovat?

Nadace J&T spolupracuje s kraji na systémových změnách v oblasti péče o ohrožené děti i na systému péče o děti s postižením. Zkušenosti rodičů i služeb se v mnohých ohledech napříč Českou republikou podobají. V krátkém souhrnu budou představeny naše zkušenosti z krajů: nejčastější potřeby rodičů dětí s postižením a to, jaké jsou nejčastější limity systému napříč Českou republikou.

Early vision support – basic prerequisites for the proper development of newborns and infants.

Petra Navrátilová

Petra Hálková

During the first months especially after birth, the child receives 75 percent of information from the environment through sight, as the dominant sense. A newborn baby who entered the world under completely physiological conditions, surrounded by receiving parents in the ordinary sense, equipped with parental competences and the usual environment, ensures for himself high-quality visual stimulation just by looking around the world while awake and with the help of the entire visual apparatus I recognize A child with prematurity, pre/peri/postnatal difficulties or associated diseases has difficulty learning about the world, and the next step is targeted visual stimulation and support for the child’s overall psychomotor development, set according to the child’s current level and the needs for the development of specific functions. We will focus on the specifics of setting up visual stimulation and functional vision testing for premature babies as part of early care services in the Association for Early Intervention in the Czech Republic.

Concurrence of early intervention and palliative care for a child with a life-limiting diagnosis

Mgr. Pavla Matyášová
Bc. Lenka Koubková

Společnost pro ranou péči, branch for family Olomouc

Early intervention has an irreplaceable role in accompanying families of children with disabilities. For children with a life-limiting diagnosis (most often these are children with a metabolic or rare genetic disease), this social service strives all the more to support the family as a whole and manage the demanding care of the child in the home environment.

In many cases, the disease threatens the child’s life, and the child can succumb to the disease at any time. The prognosis is often very difficult to determine, and families live in great uncertainty for a long time. Early intervention accompanies families of children with a serious diagnosis or with a disability from the child’s birth to the age of seven – ideally immediately after the diagnosis has been announced. ECI accompanies the parents through critical situations during repeated hospitalizations, provides equipment, maximum comfort so that the child can stay as long as possible in the home environment and, depending on the level of health, can experience joy. This is individualized support for the family and the child, incl. siblings.

Parents are not ready for their child to leave. They want to take care of the child at home and experience joy with their child. But at the same time, they are worried that they won’t be able to do it themselves. With early intervention, they are not left alone, the family gets a guide for their difficult journey thanks to early intervention. Together with the family, we are looking for the most suitable moment to invite palliative care into the family. This is helped by the ECI specialist’s repeated supportive conversations with the parents and the continuous evaluation of the situation and the health status of the child. The moment when the family calls for palliative care usually occurs when the child’s health condition deteriorates or when we are faced with the question of how to continue to maintain the comfort and quality of care for the child in the home environment. The support of experts from early intervention and palliative care is an ideal combination to ensure all the needs of the family, incl. follow-up care for the family after the death of a child.

Medical Respite Care – why is it a necessity for seriously ill children and their families?

PhDr. Ivana Plechatá

MUDr. Barbora Červíčková

Family members who care for a child with a serious diagnosis around the clock often live in constant stress, suffer from a lack of sleep, burn out and develop health problems. Medical respite care, which is unknown in current Czech legislation, is proving to be an important building block for ensuring long-term sustainable care in the home environment.

Promoting positive behaviour in early intervention practice

Bc. Veronika Němečková

Positive Behaviour Support (PBS) is a method used when working with clients with severe mental disabilities and autism spectrum disorders. This is a model that respects the rights and needs of these people, working primarily with changing the client’s environment. In the article, we will learn about the possibilities of applying the philosophy and principles of PBS in the interventions of early intervention specialists in families with children with ASD and associated mental retardation, who exhibit behaviour demanding care. We will focus mainly on the four pillars of the so-called MEAS model, i.e. on communication, environment, people from the client’s surroundings and his physiology.

Cooperating with various healthcare providers during long-term palliative care – our experience

Pavel Rosíval

We at Energia provide long term palliative care to families with children suffering from life-limiting or life-threatening diseases. We would like to share our experience with cooperation with various healthcare providers, both inpatient and outpatient facilities including primary care physicians.

SVÉPOMOCNÁ RODIČOVSKÁ SKUPINA

Jana Čelůstková

Bohumila Linzerová

Every last Saturday of the month, a parent group meets at the EDUCO Zlín z. s. early childhood intervention center. A self-help group allows parents to share their experiences, joys and concerns and to talk about their children in a confidential environment. It is a self-help group for parents of children with specific needs who are current or former EDUCO ECI clients. Parents also enrich each other with their own tools, approaches and advice on how to facilitate children’s pre-school and school preparation, with what and how to have fun, how to best develop communication and speech. Moms also like to show off their hand-made worksheets. For parents, such meetings bring new perspectives on solving problems and a more optimistic view of the world. The coordinator of the meeting is one of the mothers. The early intervention center EDUCO Zlín z. s. provides spaces for the parent group and also, by agreement, organizes meetings with experts on selected topics for the group of parents.

Dilemmas of caring for children with ASD from the perspective of a parent and a psychologist

As a mother of two autistic boys, I have been exposed to many dilemmas. I tried to introspect these dilemmas through the eyes of a psychologist. I work as a psychologist with parents of children with ASD and take care of their mental health. I’m not afraid to talk about any topic, I’m happy to answer questions. We will stop, for example, at the topic of special schools and nurseries, inclusion, home care and when we run out of energy and are looking for a placement for the child. How to balance family life with a child with ASD.

Tools of the early care counselor in social work with families of children with hearing impairment in the Czech Republic

Early childhood intervention in the Czech Republic was created on the basis of a discussion of experts from the health, pedagogical and social area. The question was what should be the result of the efforts of all experts dealing with early support of a child with a disability. The consensus was that the child was supported as much as possible, naturally included in the social environment (that is, primarily families, peer groups and educational institutions, in the place where the child lives). We can achieve such a result only if we sufficiently support the child’s family.

At the end of the 1990s, Tamtam also signed up to the social concept of early intervention, as a provider of services to people with hearing impairment. All of our work with families is aimed at parents gaining the competence to raise their child with hearing impairment, understanding their needs, but at the same time maintaining the ability to use commonly available activities for themselves and their children.

We consider the very beginning of social work with the family to be a crucial moment in the support of a young child with hearing impairment. We devote enough space and attention to clarifying our offer and finding an intersection with the parents’ expectations. The parents are the first to state the need to develop their child. Our experience shows that it is not possible to fulfill this requirement without taking an interest in and jointly naming the needs of parents and other family members. They need to understand the whole situation, find their way around it, and share their concerns and questions about the consequences of the hearing impairment on their child’s future development. Therefore, as part of the start of the service, we place emphasis on describing the child’s current hearing abilities and clarifying their impact on communication. Not being able to use normal ways of communicating with a deaf child makes them feel insecure about their natural parenting skills.

From all these concerns and questions, topics of cooperation between the family and the early care advisor are formulated. Social work using a systemic approach makes it possible to gradually fulfill individual needs and achieve the goals of the service and the resulting competencies of the family in which a child with a hearing impairment grows up. How we understand social work in Early Care Tamtam will be presented on various examples of the use of individual tools of an Early Care consultant.

Cooperation with the neonatology department and ECI

Kateřina Matějová

In the neonatology department, we meet premature and sick children and their parents, who are suddenly exposed to one of the most difficult situations in life. The department in České Budějovice provides the possibility of a long-term stay for the mother with the child. It certainly brings many benefits, at the same time it is necessary to solve the problems that arise during hospitalization in the hospital and care for such a child. In the presentation, we will clarify the role of Early Childhood Intervention in the operation of the department, what led to its involvement, how cooperation works in practice, and what positive things it brings to the department itself and especially to families.