The Missouri Developmental Disabilities Council’s Position:

Because tens of thousands of Missourians with intellectual and developmental disabilities are not receiving or are ineligible for services from the state Division of Developmental Disabilities, Missouri must increase its outreach and education efforts to help people with disabilities and their families learn about and access needed, appropriate, and individualized supports and services. Missouri must develop effective means of communicating with people with disabilities and their families, and educate them about state, local, and natural supports that can help them lead full, healthy, independent, and community-included lives.

The Missouri Developmental Disabilities Council’s Reasons:

More than 1.4 million adults in Missouri have a disability, with 20% having cognitive disabilities and/or disabilities that affect their ability to live independently. [1] Research shows that people with intellectual and developmental disabilities have greater health care and independent living support needs than people without disabilities. [2] A study found that approximately 34,000 people with intellectual and developmental disabilities in Missouri receive such services from the Division of Developmental Disabilities (DDD). [3] Nevertheless, there are tens of thousands of people with intellectual and developmental disabilities who are not receiving – due to ineligibility, waiting lists, or lack of awareness – individualized services to help them lead healthy, independent, and community-included lives.

However, there are many state, local, and other agencies and organizations that can provide support to people who do not receive services from DDD. For example, the Missouri Department of Elementary and Secondary Education’s Vocational Rehabilitation program [4] can provide medical and mental health care, counseling, assessments, and other supports when they are related to a person’s ability to work. [5] Centers for Independent Living can provide information and support to help people live and thrive in the community. [6] County Boards for Developmental Disabilities can provide case management and other services. [7] In addition, with proper information and education, family members, friends, and other natural supports can provide assistance that empowers people with disabilities to lead full, healthy, independent, and community-included lives. [8]

The Missouri Developmental Disabilities Council’s Recommendations:

  • As a state and society, we must acknowledge that people with disabilities have the right to receive appropriate supports and services empowering them to lead full, healthy, independent, and community-included lives.
  • Missouri should increase education and outreach to people with disabilities and their families - using accessible technology and other culturally and linguistically appropriate means - to inform them of the availability of supports and services including those offered by DDD, state agencies, county boards, and other organizations.
  • Missouri should increase education and outreach to people with disabilities and their families – using accessible technology and other culturally and linguistically appropriate means - about ways to identify and direct natural supports that can help them lead full, healthy, independent, and community-included lives.
  • Missouri agencies and providers should employ people with disabilities as “peer mentors” to help others learn about and navigate the disability service system and access appropriate supports and services.
  • DDD and other Missouri agencies and organizations providing services to people with intellectual and developmental disabilities should cross-train their employees to be aware of supports provided by others so that, if people are ineligible for one agency’s services, they will be referred to another that provides similar supports.
  • Missouri agencies and organizations should ensure that their education and outreach materials, as well as their websites, meet all applicable accessibility standards including those in the Americans with Disabilities Act [9], Section 508 [10], Title VI of the Civil Rights Act of 1964 [11], and the Missouri Information Technology Accessibility Standards. [12]
  • Missouri agencies and organizations serving people with intellectual and developmental disabilities should collaborate with schools to help students in special education develop and implement transition plans that include the supports they need to live full, healthy, independent, and community-included lives.

References

[1] United States Center for Disease Control. (2022). Disability impacts Missouri. Available at: https://www.cdc.gov/ncbddd/disabilityandhealth/impacts/missouri.html
[2] e.g., United States Center for Disease Control., 2022. National Council on Aging (2021). Tip sheet: Engaging people with disabilities in evidence-based programs. Available at: https://www.ncoa.org/article/tip-sheet-engaging-people-with-disabilities-in-evidence-based-programs
[3] Jackson, L., McVeigh, T., Rust, R., Miller, C. (2015). Aging with intellectual and developmental disabilities: Trends and best practices. UMKC, Institute for Human Development. Available at: https://dmh.mo.gov/media/pdf/aging-intellectual-and-developmental-disabilities-trends-and-best-practices
[4] See, https://dese.mo.gov/adult-learning-rehabilitation-services/vocational-rehabilitation
[5] See, 34 C.F.R. § 361.48 4
[6] See, http://www.ncil.org/about/aboutil/. For a list of Centers for Independent Living in Missouri, see, https://mosilc.org/mo-centers-db/
[7] See, https://macdds.org/services/member-county-boards/
[8] Sanderson, K. A., Burke, M. M., Urbano, R. C., Arnold, C. K., & Hodapp, R. M. (2017). Who helps? Characteristics and correlates of informal supporters to adults with disabilities. American Journal on Intellectual and Developmental Disabilities122(6), 492-510
[9] 42 U.S.C. § 12101, et seq.
[10] e.g., U.S. Access Board. (2017). Information and communication technology: Revised 508 standards and 255 guidelines. Available at: https://www.access-board.gov/ict/ ; Blanck, P. (2014). The struggle for web eQuality by persons with cognitive disabilities. Behavioral Sciences & the Law32(1), 4-32.
[11] See, https://www.justice.gov/crt/fcs/TitleVI
[12] See. https://oa.mo.gov/itsd/it-governance/enterprise-architecture/it-accessibility-standards
This document was developed in partnership and with support from the Missouri Developmental Disabilities Council (PL 106-402)  and Jonathan Gerald Martinis, LLC (jgmartinisllc@gmail.com).