Understanding Intellectual and Developmental Disabilities (IDD) in Colorado
Intellectual and Developmental Disabilities (IDD) impact individuals and families in unique and lifelong ways. In Colorado, over 55,000 people live with an IDD, and the need for accessible, person-centered support is growing.
In this blog, we’ll break down what IDD is, how it differs from other disabilities, and what resources exist for individuals in Colorado Springs and Denver. From employment assistance to housing and social programming, we’ll highlight how RiseUP and similar organizations are helping individuals live full, empowered lives.
Understanding Intellectual and Developmental Disabilities (IDD) in Colorado
Intellectual and Developmental Disabilities (IDD) is an umbrella term describing a range of conditions that begin during the developmental period (birth through young adulthood) and cause significant challenges in cognition and/or daily living skills. “Intellectual disability” generally refers to limitations in intellectual functioning (IQ) and adaptive behavior, while “developmental disabilities” include a broader group of conditions (which can be physical, intellectual, or both). For example, IDD encompasses Down syndrome, autism spectrum disorder, cerebral palsy, epilepsy, and many other conditions that can affect a person’s learning, reasoning, movement, or self-care. These disabilities originate early in life and are usually lifelong. According to the Arc, developmental disabilities impair an individual’s cognitive and/or adaptive abilities and often require ongoing support (arcofkingcounty.org.) If we use a broad definition including learning and attention issues, as many as 1 in 5 people may have a developmental condition of some kind (arcofkingcounty.org.) However, the formal definition of IDD (used for determining services) is narrower: the federal Developmental Disabilities Assistance and Bill of Rights Act defines IDD as severe, chronic disabilities that manifest before age 22 and substantially limit functioning in at least three major life activities (arcofkingcounty.org.) Using this strict definition, about 1.58% of the population is estimated to have IDD (arcofkingcounty.org.) For context, in a state like Colorado (with ~5.8 million residents), this equates to roughly 90,000 individuals who have an IDD and need significant support.
Prevalence and National Statistics
At the national level, IDD is more common than many realize. The Centers for Disease Control and Prevention (CDC) reports that about 1 in 6 U.S. children (roughly 17%) has one or more developmental disabilities (cdc.gov) – a figure that includes conditions like ADHD, autism, and learning disabilities. Focusing specifically on intellectual disability, prevalence is around 1% of the overall population. A 2017 community survey by The Arc estimated 7.3 million people in the United States have intellectual or developmental disabilities (thearc.org.) Most of these individuals (about 80%) live at home with family caregivers well into adulthood (thearc.org.) Thanks to better medical care and inclusive practices, people with IDD are living longer and more integrated lives in the community than in decades past. However, many still face significant gaps in support. For instance, only a minority of adults with IDD have paid employment, and those who do often work limited hours in a narrow range of job types (thearc.org.) A large share of students with IDD (around 50%) leave high school without a diploma (thearc.org), which in turn affects their job opportunities. These statistics highlight the importance of strong educational programs, transition services, and employment supports to improve outcomes for people with IDD.
Services, Waiting Lists, and Supports in Colorado
Colorado offers a variety of services for individuals with IDD, though accessing them can be a challenge due to waiting lists. Key supports are provided through Medicaid Home and Community-Based Services (HCBS) waivers for people with developmental disabilities. These waivers fund things like in-home caregiving, adult day programs, residential services, behavioral therapy, and job coaching – enabling individuals to live in the community rather than institutions. In Colorado, the two main IDD waivers for long-term support are often called the DD Comprehensive waiver (for 24/7 residential and extensive services) and the Supported Living Services (SLS) waiver (for less intensive support for adults living with family or independently). There are also waivers for children, such as the Children’s Extensive Support (CES) waiver. Unfortunately, demand for these services exceeds the available slots. Thousands of Coloradans remain on waiting lists for IDD waivers. As recently as 2014, the average wait for an adult to receive a comprehensive DD waiver was over 15 years. Colorado’s legislature has taken action to reduce this backlog – for example, investing an extra $15.5 million in 2021 to fund 667 additional waiver openings (denver7.comdenver7.com.) Thanks to measures like this, the typical wait time for services not deemed “emergency” has improved to around six years in 2023 (denver7.com.) This is a big improvement from decades-long waits, but it’s still a significant delay for families needing support. In fact, many individuals spend much of their childhood or young adulthood waiting for services – for instance, one Colorado Springs family applied for adult services when their son turned 18, and he finally received a waiver at age 35 (denver7.com.) Advocates point out that as more people are identified with disabilities earlier, the need for services keeps growing, and they continue to urge lawmakers to fund more waiver slots (denver7.com.)
Beyond waivers, Colorado has other resources: Community Centered Boards (CCBs) act as local point-of-entry agencies for IDD services, helping families navigate supports and connecting them to state-funded programs. There are also nonprofit organizations (like The Arc of Colorado and Disability Law Colorado) that advocate for individuals’ rights and help families find assistance. State programs provide early intervention therapies for infants and toddlers with developmental delays, special education services in public schools, and vocational rehabilitation for youth and adults with disabilities. However, navigating this system can be complex, and many services are contingent on waiver funding or program availability.
How RiseUP Supports Individuals with IDD
RiseUP plays a vital role in supporting individuals with IDD in Colorado. As a provider of day programs, adult and youth residency, a facilities school in Colorado Springs, community integration, and advocacy, RiseUP offers person-centered services that complement state systems. For example, RiseUP’s Adult Day Program (with locations in Colorado Springs and Denver) provides a structured, enriching environment where adults with IDD can socialize, learn new skills, volunteer in the community, and pursue hobbies each day. This helps prevent isolation and gives caregivers much-needed respite. RiseUP’s Adult Residential services offer homes where individuals receive 24/7 support while enjoying a family-like setting that maximizes independence. They also run a Family Caregiver program which allows a person with IDD to be supported by a family member who is paid as a caregiver – a model that Colorado has embraced to empower families. For community integration, RiseUP facilitates outings to public events, parks, and volunteer sites so that participants are truly part of their broader community. Importantly, RiseUP advocates alongside families for improvements in the IDD system – whether it’s helping a family appeal a service denial or joining coalitions that lobby for eliminating waitlists. Through its individualized programs and advocacy, RiseUP helps people with IDD lead rich, inclusive lives right now, while also pushing for systemic changes so that all Coloradans with IDD get the support they need.
About RiseUP
RiseUP is a Colorado-based nonprofit organization serving individuals with intellectual and developmental disabilities and their families. RiseUP’s programs include a specialized school for youth 5 to 21 years old, adult day and residential services, family caregiver support, and supported employment – all aimed at promoting dignity, independence, and community inclusion. With locations in Colorado Springs and Denver, RiseUP has been empowering people with IDD for over 15 years.