Navigating the System: A broadstroke overview of funding and services for individuals with developmental disabilities from birth forward
By Catherine Purple Cherry, AIA, CAS, LEED, Purposeful Architecture
During the journey of raising a child with special needs, it’s not unusual for parents to understand only a small segment of the services available to their child and family. It’s also not unusual for the groups
providing services to understand only a different segment of services. Very few truly know the full picture of supporting a child with disabilities throughout life or who to approach and from where the funding comes. The purpose of this article is to provide a broadstroke fundamental overview of this journey.
When children are diagnosed with a developmental or intellectual disability, they may be registered prior to the age of 18 with their state agency. This agency may be called something similar to the Developmental Disabilities Agency. Parents should register their child as soon as they have a diagnosis regardless of what advisers may say. It takes about six months and requires that you stay on top of the agency.
It’s important to understand that this registration does several things. It allows the state to recognize that the individual will require SSI (Supplemental Security Income) and SSDI (Social Security Disability Insurance) for their disability starting at the age of 18. It will also place the child on a waiting list for future services. Here’s where it gets grey, though: The agency may say that they do not provide any services to the child until they are 21 or 22 (state dependent for transition). However, if you read your state law, the age is not mentioned. Additionally, there may be waiver or other funds available which will be further explained in this overview.
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