Living with a disability: Parents fight for their children

The hard road from idea to execution

Many affected and disabled families desire better notions of living and working. They want to live their own lives, and of course they want to belong to society. They also complain that they often cannot make full use of their skills in the workshops and that further training is only offered to a limited extent.

An idea like the Waischenfeld Parents Initiative is not new. Many initiatives have already wanted to change something here and mostly failed due to high demands and requirements. If you want to open a facility, you must have a professional concept. “All services should be described in the form of structure, process and quality of results here,” says the relevant guidelines for the Free State of Bavaria. Appropriate staffing is required, including a socio-educational support plan, qualified care and establishment of a complaints management system. It is not for nothing that only the big players run such facilities.

For the ordinary mad

This is a formidable challenge for parent initiatives such as the one in Waischenfeld. “It’s very difficult, and if I had known beforehand how much work it was going to be in the end, I don’t know if I would have done it,” says co-initiator Klaus Hempfling. “I have to work on each item individually and read case law. Well, for the average person, it’s crazy to struggle through.” However, the initiative does have high hopes for the federal Participation Act (BTHG).

BTHG can help parent initiatives

On January 1, 2023, other parts of BTHG will come into effect. Many affected hope for a paradigm shift, as it should create more opportunities for participation and more self-determination for people with disabilities. Different bodies were often responsible for different support services. In many cases, a single application must cover many services. Above all, it is crucial that people with disabilities now largely decide for themselves how to use their money.

“People with significant disabilities can more freely decide where they want to live and who to demand services. Residents of special forms of housing (until 2020 ‘inpatient facilities’) can also decide more independently what they spend with the money available to them.” Federal Ministry of Labor and Social Affairs on the subject of BTHG

BTHG: Experts temper expectations

Support for adults with disabilities must not be associated with a specific type of housing through BTHG, but must be directed at meeting necessary individual needs. The Waischenfeld Parents Initiative is also based on this.

But there are already voices from experts who are tempering all expectations, because some of the innovations in BTHG have already proven to be a failure. An example is the business budget. Persons with disabilities must look for an employer who will hire them and receive financial support for this. The number of companies doing this is more than manageable.

The disabled is not the same as the disabled

Society is often unaware of how many facets a disability can have. People with disabilities are not the only typical wheelchair user or those with trisomy 21. If their disease cannot be controlled with medication, some people with epilepsy have developmental delays and intellectual disability, which may not be noticeable at first glance. Fashion drugs such as crystal meth can also lead to psychological or neurological disabilities in adolescents and young adults. You came from a normal life and now you have to deal with a disability.

Severe depression can lead to disability, as can stroke. If the IQ is less than 70, there is a disability due to intellectual disability. The range of people with disabilities is very large. There is one group that can live almost without support, while others require more care, even at night.

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