There are 7.37 million adults with I/DD in the United States. 6.14 million do not receive any publicly funded residential supports. Families and loved ones of adults with I/DD know that housing is a complicated piece of the puzzle. It is difficult to find affordable housing along with the right fit of residential services for their loved one. Every state has different policies to navigate. With a large percentage of these individuals currently living with a caregiver over the age of 60, we must work quickly.
Data should drive policy and funding solutions to meet this crisis. We are excited to share the results of our first completed Empowering Communities Initiative (ECI) and welcome requests for replication in different areas of the country.
COLORADO-SPECIFIC REPORT
Self-advocates and families in the SE suburbs of Denver, recognized a major effort is needed to prevent their loved ones with I/DD from being displaced from their community of support, forcefully institutionalized, or rendered homeless. They went to the agency that helps people connect to a Medicaid HCBS waiver, Developmental Pathways, for answers and support. They established a volunteer Housing Task Force and Developmental Pathways sponsored the AHN Empowering Communities Initiative (ECI) to identify and provide direction of what type of housing, service delivery models, and community support was needed in Arapahoe County, Douglas County, and City of Aurora. The Housing & Community Development for Residents with I/DD Report has been created to reflect the challenges, barriers, data results and next steps for the future in residential and support systems.
PREFERENCES IDENTIFIED FOR HOUSING & COMMUNITY DEVELOPMENT IMPACTING INDIVIDUALS WITH I/DD LIVING IN COLORADO
The ECI process starts with public presentations on the various benefits and considerations of different funding frameworks, property types and service delivery models. After the presentations in Colorado, a Residential Needs & Preferences Survey was given to individuals with I/DD or their family member living in Arapahoe County, Douglas County, and City of Aurora to learn the needs and desires on types of housing, service delivery models and community support for the individuals. Results showed that community members:
- Have a wide range of support needs
- Favor housing to be disconnected from their service provider
- Highly value home-ownership vs. renting
- Prefer property types such as cohousing or a planned community with built-in supports
- Have limited natural support systems
The greatest barriers to community engagement and friendship were reported as:
- lack of social skills to maintain relationships
- transportation
- difficulty scheduling
- feeling overwhelmed by crowds or overstimulated
As the growth in residential supports is considered, it is imperative that Colorado plans for the service delivery models that residents prefer. Over 50% of respondents indicated that 24/7 supervision and support would be necessary with half of those needing 1:1 support to be able to participate in the community and live outside of the family home. Notably, over 32% of respondents simply need someone to check on them once a day or every few days and do not necessarily need scheduled staff throughout the day. Once educated and asked about service delivery models in general, the majority of respondents valued the separation of one’s housing from their service provider, thus preferring a consumer-controlled setting. Shared living was the service delivery model with the greatest indication of preference, with consumer-directed supports as a close second. It is of concern that individuals with I/DD who need access to 24/7 or 1:1 support do not have an option for consumer-directed support, which was the second most preferred choice in service delivery options.
INDUSTRY INPUT
Results of the Residential Needs & Preferences Survey were taken to local industry leadership and the professional community. We gathered affordable housing providers, service providers, case managers and self-advocates. The following points were of the most importance to them:
- Affordable housing is out of reach
- Individuals with I/DD are forced to remain in their family home or placed into a provider-controlled setting
- Person-centered support is not truly person-centered by limitations of funding restrictions and regulations
- Not all desired service delivery options are available in Colorado
- Stakeholders feel their choices are limited by neurotypical standards of residential development and not reflecting what people with I/DD actually want or need
- Local city planners and the housing industry are largely unaware of the unique housing needs of residents with I/DD
IDENTIFIED COMMUNITY DEVELOPMENT NEEDS
The following are aspects of community development that data showed must be addressed to ensure a future full of opportunity for residents with I/DD:
- An increase in affordable, neuro-inclusive housing stock is desperately needed; barriers to development must be removed and incentives created to meet demand.
- Individuals with I/DD and their families want to be able to invest in a home for their future stability; support should be put in place to help make this happen.
- Barriers of service provider ability to offer individualized long-term services and supports must be removed and diverse service delivery models fully funded; a person-centered plan is useless if the system cannot deliver flexible reimbursement for person-centered supports.
- Many are still “unsure” as to what they may or may not prefer in a long-term support system, thus continued education and storytelling are needed.
- Intentional spaces and opportunities are needed to foster neurodiverse friendships and community connections beyond family members for increasing access to meaningful community inclusion and develop circles of natural support.
Without immediate attention towards bridging gaps of lifespan support and housing for individuals with I/DD, there will be a continued traumatic displacement of persons with I/DD in more restrictive, expensive and inappropriate “next empty beds.” Not only does this hurt society’s wallet, but it impacts the societal heart from the loss of their presence and contribution as valuable community members. May this report prompt community awareness into action to ensure valuable residents with I/DD in Colorado can continue to find their place and be part of their community.
To request a meeting for conducting an Empowering Communities Initiative in your local area, please contact Christina at [email protected].
Please include me in the conversation.
Desiree, I had the pleasure of meeting you years ago at a meeting in Wilmington, DE. Your passion and resolve was quite impressive!
I look forward to hearing more about this initiative and bringing it to Pennsylvania.
Thank you,
Toni Bowersox
Impressive report, Desiree! Concise and very readable summary of such a critical need in our communities. Thank you for all the great work you do. Hope you can come see us someday!