Parents of children with rare diseases often reach their psychological and physical limits without realizing it.
What they need are understanding contact persons as well as active relief in the care and support of their affected child. It is important to make use of appropriate care and nursing services as early as possible, so that parents can create islands of peace for themselves as a couple, for themselves or for their siblings.
Note 1: The amount of care required is very high, especially during the preschool years
As long as your child the child is not yet in kindergarten or school, the childcare burden for you and many parents report that they reach their limits especially in the first years of their child's especially in the first years of their child's life. Especially during this time in particular, it is important to have access to a wide range of support services. There is no one ideal solution. When the child starts school, the the effort is usually reduced. Your child is then regularly out of the house for a few hours and Out of the house for a few hours and therapies are offered, for example, by Remedial schools, so that your "driving service" is no longer necessary.
Note 2: Accepting relief is not weakness and keeps from overloading
Note 3: Watch your resources and get "rest breaks"
A scheduling tool (e.g. Doodle) can be helpful here to plan care times with the environment and professional relief offers (e.g. relief service).
The following questions can help you become aware of your own needs:
- What is good for me?
- What is the daily routine and how can time slots be created or used?
- How can I incorporate relaxing moments into my daily routine?
- Who from my environment or my family can support me and how?
Note 4: Visualize caregiver burden to identify potential for relief
Why not write a diary about what you do with your sick child throughout the day? A visualization of the care required, for example, using a diary, can help to uncover opportunities for relief.
- How long do you need for the different activities?
- What tools do you need, where do you get them, and how much do they cost?
- Who takes over which tasks?
- Which aspects of care and support are the most stressful for you?
In addition, the introduction of a point system can help to weight the burden. This helps you to prioritize the challenges and can be used, if necessary, when applying for support services (e.g. by the IV).
Note 5: Submit claims to the IV
Depending on the rare disease your child is suffering from and whether he or she is affected by a birth defect, you may be entitled to helplessness allowance, intensive care supplement, assistance contributions and/or certain aids. All these IV benefits can support and relieve you in the care and supervision of your child. So check for your child whether you are entitled to certain IV benefits. To do this, also look atInsurance benefits, application and enforcement".
Note 6: Using more than traditional respite services
Take a look at what else is available in addition to the classic Relief options (such as Spitex or relief services) exist. Some affected families, for example, take advantage of the relief offered by childminders or babysitters or babysitters, for example, in order to create small islands of peace in everyday life. Others employ an au pair in their home. In addition, professional professional cleaning service can also free up time that you can use for yourself for yourself or to spend with your children, so that the household does not become an additional an additional stress factor. Of course, these Financial costs and are therefore not always feasible, but we would not always feasible, but we would like to draw your attention to the solutions that other families other families have already discovered for themselves.
Note 7: Not all tools need to be purchased new
Aids can sometimes be bought well "second hand". Browse the various classifieds portals as well as social media groups (e.g. our KMSK Facebook group). Maybe you will find what you are looking for. Here it is also worthwhile to take a look at the German market, which is usually more extensive and cheaper.
Note 8: Relief helps combine work and family life
Working parents often perceive their job as a place of normality, balance and distraction . However, working is not always possible and sometimes workloads have to be reduced. Care and relief offers in everyday life can help you to pursue a (part-time) occupation. The Work+care platform has many more tips for working caregivers.
Important questions - Care
What points of contact are there that specialize in caring for affected children?
The Kinderspitex makes it possible for children with special needs to be cared for at home be cared for and thus be able to participate in everyday family life. It also offers also offers advice and guidance to parents. They are supported by qualified nurses with experience in pediatric care Pediatric care. Dying children are also cared for and accompanied Children's Spitex also cares for and accompanies dying children until the end of their lives. In doing so, the Kinderspitex does not provide herding and respite services. The services must be provided by be prescribed by a pediatrician. The reimbursements of the disability and/or health insurance do not cover the entire do not cover the full cost of care. The remaining financing is regulated differently in the regulated differently in the individual cantons.
As a rule, the Kinderspitex assists with the administrative And obtains the medical prescription as well as the cost approval from the communes/cantons The communes/cantons and submits the corresponding applications to the health insurance Health insurance or the IV. In addition, Kinderspitex cooperates with all involved services and regional children's hospitals.
Association hiki (help for brain injured children)
hiki supports and relieves families with brain-injured Children. The association offers relief assignments with care services.
Can parents themselves be employed as caregivers and if so, where?
Many parents take over the complex care of their affected child themselves. In the meantime, there are Spitex organizations that employ family caregivers. This allows them to invoice the hours they have worked and thus receive around 33 francs gross per hour.
Below are a few examples that have such an offer:
AsFam supports family caregivers in providing care at home and also provides expertise to parents of children with rare diseases By their side. Family caregivers are supported in this by AsFam employing them on employment contracts and pays them a salary and social security contributions for the duration of the care services provided And pays them a salary and social security contributions for the duration of the care services provided. The basic care services rendered for a family member are settled with the responsible insurance company. An hourly wage of CHF 33.50 (corresponds to the current IV assistance contribution and includes all social insurance all social security benefits).
For the care of a family member at home, parents (i.e. caring relatives) can (i.e., family caregivers) can receive financial compensation from solicare, personal care and support from qualified nursing professionals, as well as as well as substitution and relief services. The services of Solicare, as a Spitex organization, settles the accounts with the responsible insurance company Insurance company. From this, family caregivers receive an hourly wage of CHF 33.50 gross and private social insurance contributions (e.g. AHV, ALV, KTG, UVG, BVG). solicare also employs relatives without a nursing assistant diploma are employed.
When am I entitled to assistance and where can I find it?
The IV assistance contribution is intended to enable people with a significant need for assistance and a confirmed diagnosis to live as self-determined a life as possible outside of institutional structures. With the assistance contribution, people with a disability (or their parents on their behalf) can employ persons to support them in everyday life at home instead of entering a home. The occupations of an assistant can range from care and supervision Supervision, cleaning, shopping or leisure activities to support with administrative work or Support with administrative work or accompanying to appointments.
You can find more information about the assistance contribution under the tile Insurance benefits, application and enforcement.
If you are looking for an assistant, it is advisable to check local local newspapers or information boards of municipalities and shopping centers and to and to advertise on the following platforms:
Assistance exchange Switzerland
Where can I get aids for the care of my sick child?
Financing by the IV
The Ortho-Team is the innovation and market leader in the manufacture of Orthopedic and rehabilitation aids for children. It is represented throughout Switzerland in cantons in order to enable those affected to enjoy the highest possible quality of quality of life as high as possible despite physical disabilities.
In the electronic exchange organized by Procap Switzerland electronic exchange, free classified ads can be placed or searched for in the categories of aids, partnership/friendship, assistance, services and miscellaneous.
SAHB IV Depot & second hand market
The disability insurance depot for medical aids (IV depot)
is managed on behalf of the Federal Social Insurance Office (FSIO).
There, 1) high-quality second-hand aids are lent and sold, which enable
Enable people with special needs to lead a self-determined life. In
the workshops of the depots, the used equipment is overhauled and controlled
Quality guidelines and are prepared for their next use
prepared. In addition, 2) a second-hand market is available online around the clock
and brokers privately financed second-hand aids for people with physical
physical limitations, free of charge and without complications. The advertisements are
checked by the SAHB within one working week and are then
Swiss Muscle Society
In the In the area of mobility, the Swiss Muscle Society offers children and adolescents with muscle disorders information and support on topics such as Topics such as wheelchairs, Swiss-Trac, stair lifts/ramps, shoe inserts/orthotics, Bicycles etc.
Swiss Foundation for the Cerebral Palsy Child
The Foundation for the Cerebral Palsy Child offers a range of A range of aids (or financial support) in the field of mobility and care or refers to places through which these can be obtained.
Swiss Handicap AG
On social media platforms, there are various parent groups of Children with rare diseases and special needs. Take a look at for example our KMSK Facebook groupwhere one or the other second hand items or other families have valuable tips for you ready for you. In addition, you can look out on Ebay classifieds, Ricardo and Co can be found.
Look for this at
Important questions - care
What offers are there for the care of sick children - without taking over nursing activities - in their own homes and in everyday life?
Care.com Switzerland AG
Care.com is a digital platform for finding and coordinating care providers in Switzerland of care providers in Switzerland. This includes among others Childcare and can be used in part for finding care for affected children or alternatively for siblings.
The respite service takes over on behalf of the parents the care (not nursing) of their child and enables regular leisure time and rest for families. Caregivers are usually not placed for one-time assignments For one-time assignments, but provide regular and reliable assistance And reliable assistance. The families concerned contribute to the costs of compensating the caregivers of the caregivers. As a non-profit organization, the services can be offered at favorable conditions offered at favorable conditions. This means that those affected with low incomes Income can be granted benefits. In some cantons the Relief services run through Pro Infirmis and not through the relief service Switzerland. However, the same contents/conditions apply as with the Relief Service Switzerland.
Glanzzeit is an agency for childcare at home At home. This offers relief in childcare and if needed additionally in the household with cleaning, cooking, washing, shopping, etc. A so-called "Glanzfrau" supports families on the days and at the times they require, for example times, e.g. in the event of care bottlenecks, psychological overload or as a Overload or as a supplement to the daycare center. Weekend and night Night assignments are possible.
hiki - association help for brain injured children
Neighborhood Help Switzerland
The network Neighborhood Help Switzerland offers support (in particular care and Support, relief for family caregivers), which is free of charge and provided by Volunteers who can have their hours of service credited can be credited. They can fall back on these time credits when they need support themselves Need support themselves.
Swiss Red Cross
The Swiss Red Cross (SRC) offers a great deal of information and relief offers for caring relatives. In addition, the SRC offers Childcare at home in emergency situations. Check out what's available in your canton. If your Red Cross cantonal association does not offer child care, the SRC SRC usually know of good alternatives.
Swiss Foundation for the Cerebral Palsy Child
For families with a child of preschool age who has cerebral palsy the Swiss Foundation for the Cerebral Palsy Child arranges internships for prospective HF nurses. The internships last two weeks and take place on fixed dates, usually in November/December.
Foundation KIFA Switzerland
The foundation KIFA Switzerland offers, in addition to a child spitex, also relief services for families of children and adolescents with special needs (e.g. immediate help, holiday week, care cost subsidy, etc.) Needs (e.g. emergency assistance, vacation week, care cost allowance, etc.).
What temporary external offers are available for affected families in terms of care and relief?
In addition to the care and supervision of affected children in their own home, external offers from curative education houses and foundations can also be a way for parents to find relief in their everyday lives. Here they can have their children professionally cared for, in part on certain days, weekends, during vacations, etc.
What relief services are available for parents when their child is in the hospital?
Aladdin volunteers visit children in the hospital during the absence of their Parents are absent, in order to relieve the burden on family members and at the same time patients' undivided attention at the same time. In addition, the Aladdin apartment in offers families of hospitalized children immediate proximity to the hospital and a place of a place of peace and retreat. At the Winterthur Cantonal Hospital, a two-room apartment is Apartment is available for parents whose child has to spend a long time in hospital care in hospital care. Costs: first night CHF 30, each additional night CHF 10.
Children's Cancer Aid Switzerland
The association supports families in accompanying children and their parents during the therapy in the cancer ward of the of the Children's Hospital Zurich.
In addition, they offer accommodation to affected parents
near the children's hospital, and they organize regular coffee
Regular coffee meetings so that parents can exchange ideas with other affected parents
with other affected parents.
Ronald McDonald Children's Foundation (BL, BS, GF, LU, SG)
In the Ronald McDonald Houses, the families of sick children can relax from the hectic daily hospital routine and exchange ideas with others affected by the disease. Families pay a symbolic contribution to costs of between 15 and 20 francs per night and room between 15 and 20 Swiss francs.
What daycare, kindergarten and (day) school services are available for children and adolescents with a rare disease?
What permanent off-site housing options are available for children and youth with rare diseases?
Certain special education homes and foundations also offer parents the possibility of placing their child in a (partial) boarding school, where he or she is professionally cared for and supported according to his or her needs.
What agencies provide respite and palliative care services?
Important questions - everyday life facilitation
Who provides transportation services for children with disabilities and/or rents vehicles for affected families?
easyCab offers transports in a lying position in Switzerland and Accompanied by medical personnel, as well as wheelchair and pedestrian transports Pedestrian transports in case of confirmed medical necessity.
pro pallium offers a free ride service to low-income families free transportation service. The service is financed by donations. The Service can be booked for transports of pro pallium children and accompanying persons (parents, caregivers or pro pallium volunteers). As Transports are, for example, excursions with an affected child, bringing or picking up from a camp, vacation or hospital stay.
Swiss Muscle Society
In the In the area of mobility, the Swiss Muscle Society offers children and adolescents with muscle diseases offers information and support on Topics such as motor vehicles, car rental, driving services, etc.
Swiss Red Cross
Children with significant disabilities and their Accompanying persons can make use of the services of the Red Cross Red Cross driving service.
A SRC volunteer escort brings affected families to their destination Families to their destination in a suitable vehicle. This service is subject to a charge.
Swiss Foundation for the Cerebral Palsy Child
The Swiss Foundation for the Cerebral Palsy Child has a fleet of driving school cars that can be rented by specially trained driving instructors specially trained driving instructors. This enables People with a physical impairment to acquire a driving license. In addition the foundation, in collaboration with Europcar, is active in the nationwide rental of cars and minibuses suitable for the disabled.
The Children's Spitex has established a cooperation with the private company "Spitex Mobile" company to provide families of children with special needs throughout Special needs throughout Switzerland with vehicles that have been adapted for wheelchair free of charge to families of children with special needs. Only for the fuel fuel is the responsibility of the parents. The Spitex Mobile Family Bus can be Can be borrowed for up to two weeks, subject to availability.
Tixi Driving Services (AG, AI, AR, SG, ZG, ZH)
The "TIXI driving services for people with a disability" are non-profit associations for people with limited mobility, who do not use the who cannot use public transport or can use it only under difficult conditions can.
What is the Eurokey and where can you get it?
The Eurokey is a service provided by Pro Infirmis. It is a locking system that is widely used in Europe and can be opened with a universal key universal key. It gives access to elevators, lifting platforms, locker rooms, toilets and other facilities, to lifts, hoisting platforms, barrier-free changing rooms and toilets, as well as to other facilities For people with disabilities.
All eurokey locations can be accessed on the go using the free Smartphone application "eurokey" while on the move. The key can be obtained for a one-time fee of CHF 25.
Important questions - Rehab
What rehab facilities are recommended for children with rare diseases and their families?
Adeli Medical Center (Slovakia)
The ADELI Medical Center is an international rehabilitation center Rehabilitation center that specializes in the treatment of patients with neurological neurological deficits. The following diagnoses belong to the Core competencies: Cerebral Palsy, Stroke, Traumatic Brain Injury, and Congenital Neurological Deficits and congenital neurological deficits.
Children Rehab Switzerland
Aftercare Clinic Tannheim (Germany)
The Tannheim Aftercare Clinic offers family-oriented aftercare for affected children and adolescents and their families. Here, individual therapy plans are developed that address both psychological and physical consequences of the rare disease.
Interesting technical articles from the KMSK knowledge books "Rare Diseases
1. KMSK Knowledge Book "Rare Diseases - Insights into the Lives of Affected Families"
Helene Meyer-Jenni, Kinderspitex Zentralschweiz: "Professional care at home"
Franziska Holdener, Respite service, Insieme Innerschwyz, Relief Service "Zyt ha" : "Air for the Parents, Variety for the the child"
2. KMSK Knowledge Book "Rare Diseases - The Way - Genetics , Everyday Life, Family and Life Planning"
Sarah Müller, Relief Service Switzerland, Canton of Zurich: "Limits of resilience - how parents can deal with it can deal with it"
Jasmine Mayr, Kinderspitex Ostschweiz: "How affected mothers can draw new strength"
5. KMSK Knowledge Book "Rare Diseases - Digital Knowledge Platform for Parents and Professionals"
Who helps when affected parents reach their personal limits?
Anja Gestmann, Relief Service Switzerland, Aargau-Solothurn:
Preventing overload - accepting help
Orlande Vetter, Ronald McDonald House Foundation Bern: Proximity helps in the healing process
Fabienne Jenni, Proinfirmis Zug: Finding suitable long-term assistants is often a matter of luck