The history of Developmental Disabilities Awareness Month (DD Month) can be traced to 1987, when Ronald Reagan first declared March as a month dedicated to raising awareness and “according to our fellow citizens with such disabilities both encouragement and the opportunities they need to lead productive lives and to achieve their full potential.”
In the 33 years since Reagan’s declaration, attitudes toward individuals with developmental disabilities have shifted and legislative initiatives and programs have increasingly supported the independence of individuals with developmental disabilities. However, there is still work to be done, as we learn more every day about this broad group of conditions. And the more we learn, the better equipped we are to fulfill that vision of inclusion and independence that has been a part of DD month since the beginning.
Defining Developmental Disabilities
According to the CDC, developmental disabilities are a range of conditions characterized by impairment in physical, learning, language, or behavioral development. Developmental disabilities generally begin early in life – often before birth – and are typically lifelong conditions that affect a person’s ability to function day-to-day.
This represents a range of different conditions, which can cause physical and/or learning impairments of varying severity. As a result, the individuals’ needs may vary significantly as well. However, these represent a group of disabilities that are often grouped together – so much so that most states even have waiver programs and services specifically designed to meet the needs of individuals with disabilities.
How have such programs developed? To answer this, let’s look at the history of developmental disabilities in America, which centers on two related 20th century initiatives.
Developmental Disability Legislation
This story begins in 1963, when John F. Kennedy signed the law that would eventually be known as the Developmental Disabilities Assistance and Bill of Rights Act (DD Act). This legislation, which began as an amendment to the Social Security Act, was the first major legislation to combat mental illness and intellectual disabilities.
In 1963, when this law was signed, developmental disabilities received very little federal funding or attention. However, Kennedy, whose sister Rosemary was born with intellectual disabilities, made them a priority for his administration. Partly because of the Kennedy family’s commitment to intellectual disabilities and partly because of the commitment of various grassroots movements by family members of individuals with developmental disabilities, public attitudes toward individuals with developmental disabilities shifted significantly in the years that followed.
In 1970, Kennedy’s amendment was expanded and renamed. It became known as the Developmental Disabilities Services and Facilities Construction Amendment of 1970, making this the first law to introduce the term “developmental disability.” This allowed for an expansion of the previous law, which had only included individuals with intellectual disabilities, to cover individuals with cerebral palsy, epilepsy, and certain other neurological conditions that occur in childhood.
This law became the Developmental Disabilities Assistance and Bill of Rights Act in 1975 and was amended several times in the next decade. The 1975 amendment demonstrated a significant shift away from institutionalization and toward independence, as it introduced language requiring “habilitation in the least restrictive setting that maximizes developmental potential” and specified that public funds should not be provided to institutions that don’t meet minimum quality-of-life standards. In 1978, the law was again amended, this time to include definitions of service areas that are necessary in order to support individuals with developmental disabilities. With these changes, the DD Act increasingly stressed independent living within the community over institutionalization.
Meanwhile, another shift was happening. Examinations of Medicaid spending in the early 80s revealed that a disproportionate amount of resources was being used for institutional long-term care. As a result of these findings, Medicaid began looking for alternatives to expensive institutions, which led to the development of the Home and Community-Based Services (HCBS) waiver program. This program was established in 1981 and was incorporated into the Social Security Act in 1983.
This program gave states the ability to meet the needs of people who prefer to get long-term care services and supports in their home or community, rather than in an institutional setting. It also enabled states to identify populations that were at risk of institutionalization and to design waiver programs to meet their specific needs.
As the history of the DD Act demonstrates, individuals with developmental disabilities were one such population. And by the time the HCBS waiver program was established, service areas and alternatives to institutionalization had already been identified. So, it makes sense that many states, including Florida, developed programs to serve the needs of individuals with developmental disabilities.
Florida’s Waiver Program
The DD Act has redefined developmental disability many times since 1970, when the term was first introduced. The 1978 amendment switched from a list of specific conditions to the more generalized approach that we still use today. As a result, conditions that qualify as developmental disabilities for the purposes of the HCBS waiver may vary from state to state.
Florida Statutes recognize seven conditions that, in their most severe forms, meet the requirements established by the DD Act and Medicaid rules. They are autism, cerebral palsy, spina bifida, Down syndrome, Prader-Willi syndrome, Phelan-McDermid syndrome, and intellectual disabilities. Each has unique challenges that impact the services required to support affected individuals. But this diversity of needs also means that there is diversity in terms of capabilities.
We can honor the spirit of DD Month by recognizing the diversity within this group and celebrating the steps that we’ve taken to ensure that individuals with developmental disabilities continue to receive the encouragement, opportunities, and support that are the foundation on which DD Month was founded 33 years ago.