With millions of people affected by I/DD and so much to learn, anyone can benefit from a solid launching point. Let’s take a look at some basic info.
While a person can have both an intellectual disability and a developmental disability, there is some overlap in how the terms have commonly been used in the past. “Developmental disability” or “DD” has often been used as both an umbrella term and a more specific category of disabilities. The more concise and increasingly common “I/DD” helps to simplify this, but don’t be surprised if you still see “DD” used broadly by some organizations—it doesn’t necessarily preclude intellectual disabilities.
While specific definitions can vary by state, ID is generally characterized by significant limitations in intellectual functioning (mental capacity, learning, etc.) and adaptive behaviors (conceptual, practical, and social skills typically learned from an early age).
Specific definitions may vary by state and may also encompass ID, though developmental disabilities also include physical disabilities present at birth or developed in childhood.
Ranging from Medicaid waivers to address the financial components of professional I/DD services and supports to community support groups and disorder-specific organizations, there are many resources available. Connecting with a variety of them is hugely beneficial to both individuals and families to “connect the dots” between financial needs, education, and the sharing of ideas within our community!
Of the estimated 7.3 million people with I/DD in the United States, only about 20% are known to or have received services from state agencies (source: Larson et al, 2018). Yes, this is low. But the number of people receiving supportive services has increased year-over-year! This is due to a combination of funding and increased awareness of programs and individual services that can help our I/DD population. Still, waiting lists for Medicaid services aren’t uncommon, so it is very important to apply with your state early on.
Of the 7.3 million people with I/DD, only 1.49 million were known to or served by state I/DD agencies.
34% of adults with ID aged 21-64 are
An additional 10% are seeking employment,
making the total labor force 44%.
62% of adults with ID in a competitive setting have been at their current job for 3+ years.
81% of adults with ID in a sheltered setting have been at their current job for 3+ years.
Choosing a provider to allow into your home or to care for your loved-one should not have to be a leap of faith. This is an important decision that should improve quality of life and freedom as well as promote individual growth. Here are our quick tips and questions to ask when choosing an agency:
Always look for accreditation or certification.
Do case workers and managers stay engaged with individuals?
Ask about the range of services provided. Is there room for growth? For day supports in between?
Are any fun, social activities included for I/DD clients?
Is the agency experienced in navigating Medicare waiver funding?
Feel free to ask lots of questions, and expect good answers.
Is the agency easy to reach?