As a parent, learning that your child has developmental disabilities can be a life altering moment in time and can cause a devastating chain reaction of events. These events have the potential to change family priorities and structure, hurt relationships, deplete financial savings and stability, and emotionally drain everyone intimately involved with you and your child. How do you find human services programs, agencies, or advocates, whose primary job is to help you provide everything your child needs? It certainly can be an overwhelming barrier, but it's the first step in giving you, your child, and your family a plan of action, goals, success, good mental health and bringing everyone back together.
What are Developmental Disabilities?
The word disability means something different to anyone you ask. Officially, having a developmental disability means the disability appears before someone turns 22 years old and causes a chronic life long or extended duration impairment. These disabilities, which may not be seen, can be physical, intellectual, neurological, psychiatric (or others), and the disability has a strong need for services or special care. (Developmental Disabilities Act, section 102)
What are Services?
Developmental disability services come from someone outside your family unit who works in Human Services. This support is referred to as “services” and comes from medical, educational, and federal and state government programs.
Barriers to Services
Running into barriers while attempting to locate and navigate services for developmental disabilities are not because you don't want to help your child, or don't care - chances are, you are facing a wide rage of emotions. Some barriers that take an emotional toll and make it hard for you to react swiftly are:
Denial. Parents often believe that their child will “grow out of it” (Ziolko, 1991) and search for multiple opinions until they receive one that fits into the expectations they have for their child (Watson, 2008).
Stigmatization. When a parent judges someones disability diagnosis, they will usually react the same way to a similar diagnosis for their own child. This stigmatization is attached to disabilities, they think their own child will be bullied, isolated and rejected by peers, as well as other adults (de Boer, Pijl & Minnaert 2010) .
Lack of knowledge. Simply not know anything about the disability their child has been diagnosed with is enough to stop anyone in their tracks. Parents will read anything they can get their hand on about their child's diagnosis and think they can do it all on their own. Often finding themselves more confused and no further ahead.
Other barriers. Other emotional barriers that impact families affected by developmental disabilities could be: adaption and adjustment, lack of family support, financial limitations, fear, frustration, withdrawal, rejection, embarrassment, shame, guilt, confusion, misunderstanding, not knowing...