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Life as a special needs adult

Coming of age is an important event in every young person's life. It brings independence

and freedom and many celebrate their 18th birthday with an undeniable degree of excitement.

Photograph: Unsplash

Text: Sara R. Newell / Michaela Medveďová

With special needs adolescents turning 18 is a period of uncertainty, and in some cases, it is a period of downright anxiety. When a young person with special needs turns 18, their case is moved from the municipality child-disability department to the adult-disability department. Although it would seem obvious that a person's special needs would be the same throughout the majority of their lives, it is not uncommon for municipalities to see the matter differently when a young person turns 18.

In this article, we take a closer look at the process surrounding moving into adulthood when you have special needs - but also on how, in practice, it may not always be smooth sailing.

What does the law say?

The §19 amendments to the Service Act (Serviceloven) was passed on January 1st, 2021, to create a bridge for teenagers with a disability or long-term/chronic illness who are moving into adulthood. This new legislation states that municipalities must reach out to these adolescents as soon as they turn 16 to get a head start on the transition into adulthood.

According to Socialstyrelsen, the municipality-appointed caseworker should approach the transition holistically and thoroughly, ensuring that the young adult and their family are actively involved in the process, and their wishes are heard and taken into account. Meetings should cover everything from assistance or support needs to employment and education, housing and social circumstances.

The municipality and other institutions should collaborate both independently and with the young adult and their family to ensure that the specific plan for passing into adulthood can be put into effect immediately after the person in question's 18th birthday. The intended purpose for planning the process well in advance, i.e. after the 16th birthday, is to ensure that young adults do not go without much-needed assistance once they turn 18.

Does the law work in practice?

The short answer is that it all depends on the municipality and how they carry out the above described legislation in practice. Unfortunately, this means that despite the law dictating that the transition should happen as soon as possible after the child's 16th birthday, it is not uncommon for families to experience significant delays in being contacted or not being contacted at all. When turning 18, the transition from receiving assistance from the child-disability department to having one's case moved to the adult-disability department can result in a decrease or elimination of necessary assistance. Likewise, it can also result in the wishes of the young adult and their family not being respected.

According to the parents of a multi-handicapped daughter, regarding when she turned 18: "The municipality tried to have her move to a residential institution, despite her explicit wishes to keep living at home. When this did not succeed, the municipality reduced her total vital assistance by 80%, and completely without justification."

In the case of a parent to an adult son with autism, the transition to adulthood was even more radical: "My son needs assistance 24/7 - he is like a 2-year-old child and cannot be left alone. When he turned 18, all of our assistance at home was removed. We have had to start from scratch in battling the municipality to get assistance for our son.

Options for when your child needs decision-making help

While parents should be a part of the dialogue with the municipality alongside their children, it is essential to remember that once your child turns 18, they are presumed capable of making sound judgements for themselves, and they become legally responsible for their own decisions.

Once your child turns 18, the caseworker will only discuss your child's matter with your child if they consent to your continued participation in the process. Your child can also give another person a power of attorney, which will allow them to act on their behalf in specific areas, such as finances.

After your child reaches the age of 18, the focus ceases to be on the family's needs as a whole, and the primary area of focus is on your child's needs. According to DUKH, financial services such as additional expenses for children or lost earnings no longer apply once your child turns 18.

If your child has a severe disability, you can apply for legal guardianship (værgemål), which gives the guardian full or partial control over an individual's affairs. You can apply for legal guardianship between four and eight weeks before your child's 18th birthday, but guardianship will only come into effect after your child's 18th birthday. Applications are handled by the Family Court (Familieretshuset). However, it is not uncommon for the application approval process to exceed eight weeks.

Even in the case of legal guardianship being granted, neither does this guarantee smooth sailing into adulthood. For example, a mother who has been appointed the legal guardian to her 18-year-old, non-verbal, autistic son with a mental disability describes that her son lives at home and that this is possible since he receives the support of a disability helper while she is at work. However, the municipality deemed that her son's assistance hours were above the normal level to be expected, and she says: "On this basis, the municipality wanted to place my son in a residential institution, and informed me that if I did not agree to this, that the municipality would start a case to cease my guardianship of my son."

No matter what situation you and your soon to be 18 year old are in, remember to surround yourselves with support networks and social groups. These can be a great source of information and support and can help deal with the everyday challenges that people with a disability and their families face in Denmark.

Resources that can help

If your family is preparing for the transition towards your child's legal adulthood, DUKH (Den Uvildige Konsulentordning på Handicapområdet) is an independent organisation that gives parents and people with handicap free legal counselling and is a valuable source of disability-related information.

For Lige Vilkår, an organisation helping parents with special-needs children, holds an event providing information about the transition from a child to an adult.

DUOS, a welfare company focused on helping the elderly and children and adults with disabilities, also offers a seminar, among other topics, on the issue of transition.

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