Cleaning up your room, homework, bedtime – sooner or later most families have the same discussions. Families with a parent or a child with a disability are technically no exception. However, they sometimes also have to overcome many other challenges. But what type of support is available to enhance their daily lives?
Families are often more restricted and burdened by external barriers than by the impairment of a family member.
Parenthood is a human right and is defined as such in the UN Convention on the Rights of Persons with Disabilities, which has already been adopted by many countries. If parents with disabilities need help to exercise this right due to physical or sensory impairments, they may be eligible for parental assistance. This does not replace the parent’s personal assistance services, which might still be required in other areas of life.
Parental assistants take care of the child’s needs, for example, assist with housekeeping or errands outside the home. They also support measures to ensure age-based child development and look after the child, while the disabled parent is in treatment or therapy sessions for example.
In 2016, the Federal Association of Disabled or Chronically Ill Parents (Bundesverband behinderter und chronisch kranker Eltern e.V., bbe e.V.) has published a new guide to parental assistance, which is also available in Simple Language.
Having said that, examples like Lydia Zoubek show that when push comes to shove, things also need to happen without available parental assistance. The mother of two is blind and so is her husband. In an interview with REHACARE.com, she reveals that so far she was always able to find a solution for all kinds of different situations. One thing that’s particularly important to her is for her children to have a normal childhood. "My parents don’t have to compensate for my disability," insists Zoubek.
Parents: networking, communication, advice
Support to handle everyday life with a child is not the only important aspect for parents with disabilities. They often also want to communicate with other parents, who are in a similar situation. This happens increasingly in online settings via blogs and social media channels. These venues make it possible for parents to stay in touch even across physical distances.
Self-help groups are also very popular. One example is "M courage – Mütter mit Handicap" (English: M courage – Mothers with Disabilities) in Hamburg. It welcomes mothers with disabilities or chronic illness to meet once a month and share their experiences in an intimate setting. First and foremost, the group wants to encourage mothers to create their own lives with disability and children as they see fit.
The recently established Verein Rückenwind e.V. (English: Wind at your back) is also aimed at mothers, but mothers of a disabled child. Since August 2015, the club’s mission has been to connect and inform mothers of children with disabilities and care needs of all ages. Mothers are meant to be encouraged and find peers – regardless of the type of disability. What’s more, Rückenwind e.V. also wants to raise awareness of the living conditions of mothers of children with disabilities and ask for additional support.
Children with chronic diseases and/or disabilities are not always able to grow up in their own families. If the biological parents are unable to care for their children, the Federal Association of Children with Disabilities in Foster Care (Bundesverband behinderter Pflegekinder e.V.) is dedicated to placing children across Germany with the right foster family. The Association also provides consulting services and generally calls attention to this fairly unknown option.
Children usually deal with the issue of disability in a very open and carefree manner.
Children are rarely afraid to ask questions
Whether children are personally affected or whether it’s about other children or adults – children are inherently easy-going when it comes to disabilities. They are generally interested and frequently ask questions if they are unable to understand things right away. At least, if their parents allow it. After all, it’s typically adults who don’t want their children to ask people about their disabilities. Meanwhile, those people are typically fine if they don’t get stared at and are willing to explain their situation and make others understand.
To stop reservations in their tracks, people should not only have as much exposure as possible, there should also be more variety in children’s bedrooms, for instance by having toys that feature disabilities. There are teddy bears with disabilities or the option of adapting the favorite toy of a child with a disability at "Toy like me", where the doll is outfitted with a prosthesis or guide dog for example.
Generally speaking, both children and adolescents have a strong sense of ownership and sharing. For example, if their brother or sister has a disability, siblings usually want information about the cause, prognosis, and implications. To that effect, some of them even want to assume actual responsibilities and duties in the family. And although parents are often worried that too much information and responsibilities might be too much for a sibling to handle, not knowing is often worse. Find out what shapes and affects both young and adult siblings of people with disabilities in our article titled "Of young and older siblings with or without a disability".
The fact of the matter is, in addition to social inclusion, an active participation in all family aspects is crucial to ensure a happy family life.