Understanding I/DD and Disability-Related Laws

As outlined in the first blog in this two-part blog series, understanding the definition of I/DD is critical to understanding the needs of individuals with I/DD.

Let’s review the definition in the first blog before examining important disability-related laws, the focus of this article.

What is Intellectual/Developmental Disability (I/DD)?

The term I/DD, or Intellectual/Developmental Disability, encompasses many different conditions, all of which affect a person’s ability to learn and to function in society on a day-to-day basis.

I/DD includes two similar but not identical groups of conditions: intellectual disability and developmental disability. The term developmental disability is a broader term than intellectual disability. It includes intellectual disability, but also conditions such as Attention-Deficit Hyperactivity Disorder (ADHD), learning disabilities (such as dyslexia or auditory processing disorder), and some physical conditions such as cerebral palsy (CP).

Intellectual disability specifically refers to individuals with documented cognitive limitation or impairment, and limited ability to complete at least three activities of daily living independently. The word “and” is a very important word in this definition, because it’s easy to focus only on the “documented cognitive limitation or impairment” part of the definition, and in the past, the presence of functional limitations was not considered.

Today, both parts of the definition are required, because the importance of the ability to function in daily life is recognized. Related to this is a recognition that understanding the types and levels of supports and resources that a person needs in order to be able to function as independently as possible is as important – or more important – than simply labeling someone as having an I/DD.

Important Disability-Related Laws

A thorough review of all the laws that impact people with I/DD or with other disabilities is beyond the scope of this blog, but there are three Federal laws that are so important that I’m describing them here briefly. These are:

• The Rehabilitation Act of 1973
• The Individuals with Disabilities Education Act (IDEA), first passed in 1975
• The Americans with Disabilities Act (ADA) of 1990

Rehabilitation Act of 1973

Simply stated, the Rehabilitation Act of 1973 gave people with disabilities Federal rights that they didn’t have previously. The purpose was to prohibit Federal agencies from discriminating against someone with a disability, and also to authorize a variety of supports for people with disabilities to help them live and work as independently as possible.

Individuals with Disabilities Education Act (IDEA)

The Individuals with Disabilities Education Act (IDEA) of 1975 is the law that gives all children with disabilities the right to a free and fair education. This law revolutionized access to resources, especially school and community-based resources for children with disabilities of all kinds. Before IDEA was passed, public schools rarely included children who needed wheelchairs, had significant healthcare conditions, or who had behavioral, developmental or intellectual disabilities. Some schools had a “special classroom” or two but the vast majority of children with I/DD simply didn’t have the right to attend public school. This forced their parents to either keep them home or send them to institutions.

Americans with Disabilities Act (ADA)

The Americans with Disabilities Act (ADA) of 1990 built on the principles in the Rehabilitation Act, but expanded them to apply not just to Federal agencies but to a wide range of public places, and required that “reasonable accommodations” be made in order to help people access and use resources in these various places.

The U.S Department of Justice website has a comprehensive review of these three laws and many other laws related to disability rights.

The Cost and Impact of I/DD on Families and Society

Ask a family member what the impact of having a member of the family who has an I/DD is and you will likely hear story after story about both the negative and positive impacts the person with I/DD had on the family.

Negative impacts often include the amount of time and energy required to care for the person, anxiety about the person’s future, stress related to advocating for the healthcare, educational, and financial resources the person needs, and concern about the financial costs sometimes involved in the person’s care.

Despite the reality of the negative impacts of living with and caring for a person with I/DD, in my experience working with families of both children and adults with I/DD – even those who required a great deal of care and support – the overwhelming impact that I have witnessed is that the person with I/DD had a positive effect on the family, often described with words like love, meaningfulness, and joy.

Sometimes that impact was due to the person with I/DD’s sense of humor, or their artistic ability, or their ability to love and be loved without conditions, or their ability to inspire by overcoming the challenges they faced. An example of this comes from one of my earliest memories of a family with a person with an I/DD. The family attended the same church that I attended. They had sons who were friends of mine and they also had a daughter, who had Down syndrome and was at that time considered to have “severe mental retardation,” meaning that she required a great deal of support and many resources.

Most people with her diagnosis were living in institutions at that time. But this family raised her in their home and she attended a public school. Her mother brought her to church, sat right up front, and enrolled her in Sunday school. Her mother insisted that she participate in church life and she insisted that she attend public school. This was well before the Individuals with Disabilities Education Act was passed to require free public education for people with disabilities.

I spent a great deal of time with that family, and their attitudes helped form my attitudes about people with I/DD. There is no doubt that – despite the financial cost and the cost in time and energy to provide for her care – the impact of their daughter was a positive and joyful one. In my professional life, working with many hundreds of families with children or adults with I/DD, I’ve witnessed the same positive impact in the majority of those families, and I’ve witnessed a parallel recognition by society of the value of people with I/DD (and physical disabilities as well). It’s my personal belief that we still have a long way to go as a society in learning to value people with I/DD, but we are certainly far, far ahead of where we were just a few decades ago when hundreds of thousands of people with I/DD were still “housed” in massive institutions.

Related to the financial cost of I/DD, there is no doubt that for many families having a child with I/DD is expensive. Some estimates are that the “cost” in financial terms can be $50,000 or more per year. The financial cost to society of providing special education, residential support, and other services for people with I/DD is in the many billions of dollars.

In North Carolina, an important resource for families is known as the “Medicaid Innovations Waiver,” a Federally-approved program that provides financial support for people with I/DD whose needs are substantial enough that they might otherwise live in an institutional setting.

Additional information about the financial cost of I/DD to families or society can be found at these web sites.

• https://www.gao.gov/products/gao-23-105457
• https://www.ncdhhs.gov/providers/provider-info/mental-health-development-disabilities-and-substance-abuse-services/idd-systems-services

HOPE, affiliated with North Carolina’s Family Support Network, provides resource information and various other supports for families of individuals with I/DD.

Resources at Catawba Valley Healthcare for People with I/DD

Catawba Valley Healthcare is a leading I/DD healthcare model in the country. Its primary care and behavioral healthcare resources are available for adults 18 and older, including those with I/DD. For behavioral healthcare, individuals must be able to communicate effectively and must want to participate, regardless of whether they have an I/DD. In some cases, a family member or other support person may participate in treatment sessions in order to help advocate for the individual or to help with communication.

CVH also offers several resources specifically for adults with I/DD. These include the Life Skills Program, which as described on our website, is a day program that, “provides independent living skills and pre-vocational training opportunities for individuals with mild to profound intellectual developmental disabilities. The program assists individuals who need help developing essential work, social, and daily living skills.” CVH also offers residential support for people with I/DD, including four group homes. As described on our website, the goal of our I/DD Residential Program is “to enhance and encourage as much independence as possible.”

Learn more about Catawba Valley Healthcare here: cvhnc.org

This blog is part of a two-part blog series. Click here to link to the first blog.

*This blog was authored by Donald W. Mott, LPA

Donald W. Mott is a psychologist who has worked with children, adults, and families for over 40 years, including many years in the fields of early childhood development, developmental disabilities, and community mental health. He was formerly Chief Clinical Officer at Catawba Valley Healthcare, and is now semi-retired, serving as Senior Advisor. Don has special interests in social justice issues, grant writing, and data analysis. He has an M.A. in Educational Psychology from the University of Nebraska–Lincoln and numerous publications, including journal articles, book chapters, and one book. Don enjoys singing in the Hickory Choral Society and his church choir. He lives in Hickory, NC with his wife, Kathy. He can be reached at dmott@cvhnc.org.