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Resources provide information on what self-directed services are, why they are important, waivers, recruiting, hiring, training and managing staff, budgeting and relevant policies are particularly welcome. All resources are screened by the Alliance to ensure the following:

  • They are relevant to the topic of self-directed services
  • They are factually accurate and current
  • They are respectful of the rights, dignity and full humanity of all people
  • They are accessible and usable

COVID-19 Specific Resources

Guidance on COVID-19 Patient Visitation Policies: Collects national and state visitation policies. It also includes a resource to determine “Is Your Hospital Visitor Policy Discriminatory?”

Results of the Direct Support Workforce and COVID-19 National Survey 2020: Useful data collected from 9,000 DSPs in May/June 2020. Includes perspectives on both how COVID-19 affects the direct support workforce, and how it affects the people they support. They have graphs on “Direct Support Workforce Pay and Hours,” “safety measures,” and “Effects on people with Intellectual and Developmental Disabilities.”

More Than 1 in 5 Illinoisans Living in State Homes for Adults With Disabilities Have Tested Positive for the CoronavirusIn Illinois, at least 355 people who live in state-run homes for adults with disabilities have tested positive for the coronavirus. “They don’t know why their family has stopped coming to visit,” a relative said.

Disability Justice & COVID-19 Webinar: Learn about the intersection of race, anti-Blackness, class, and disability. It featured Dorian Taylor, Elandria Williams, Lateef Mcleod, Leroy Moore Jr, and chat moderation by Cyree Jarelle Johnson. (May 8, 2020)

How service agencies should address COVID-19 Webinar: Training hosted by the Alliance for Citizen Directed Supports and Values Into Action (March 24, 2020)

Response to COVID-19 Resource Guide: This guide from our Member Organization Values Into Action is continuously updated with resources to help you with self-direction and to stay connected (virtually) to your community. 

Why States Should Expand Self-Direction in Response to COVID-19 In response to the current coronavirus crisis, the Centers for Medicare and Medicaid Services (CMS) is currently encouraging states to expand or adopt self-direction in its Appendix K: Emergency Preparedness and Response Instructions for 1915(c) waivers.

Plain Language Tips For Working With Support Staff During COVID-19: Need help communicating with your support staff about issues related to COVID-19? Or do you provide supports and want to better understand and communicate with the people you support? This guide will help you!

California State Council on Developmental Disabilities COVID-19 Resources in English/Español: On their website you can find bilingual resources including links to their four-part Youtube series “Safety Tips Videos from Self-Advocates“/”Consejos de seguridad de COVID-19 de auto-defensores en español.” They also have a large collection of written materials in Plain Language.

COVID-19 Case Tracker
This resource from Autistic Self Advocacy Network can be used to to track COVID-19 cases for people with disabilities, and is more comprehensive than government data. It can be used to advocate for self-direction and illustrate the harms of institutionalization

Interactive Map of State Cases and Deaths Attributed to Long-Term Care Facilities: This map by KFF uses data reported directly by states (versus through news outlets) through either state COVID-19 reporting or state press releases 

General Resources:

Consumer-Directed Personal Care Attendent Handbook: A handbook for DSP’s and PCA’s supporting people with self-directed services.

Why Life in the Community matters: Video on why life in the community is important for everyone

My Voice Counts: Self Advocates’ Guide: This is an easy to read guide to supported decision-making

National Resource Center for Supported Decision-Making: Offers a state-by-state guide to relevant laws

National Center on Advancing Person-Centered Practices and Systems(NCAPPS): NCAPPS is a national technical assistance center funded by the Administration for Community Living and the Centers for Medicare & Medicaid Services. HSRI is serving as the Center’s administrator, coordinating and providing assistance to help states, tribes, and territories implement person-centered practices.

Reparations for Autistic People of Color’s Interdependence, Survival, and Empowerment: A fund for direct support, mutual aid, and reparations by/for autistic people of color!

Temple University Institute on Disability Person Driven Services Webpage: The are collecting stories of people who use Person Directed Services (PDS). Share your story on their site!

Case for Inclusion: The Case for Inclusion 2020 is the most comprehensive assessment available of how well programs in all 50 states and the District of Columbia are serving people with intellectual and developmental disabilities.

CMS Guidelines for Self Directed Services: Guidelines from the Center for Medicaid and Medicare Services about what self-directed services are, who they are for, and how they are provided

Community Living Summit Resources: In May of 2018, the Community Living Policy Center (CLPC) worked with Autistic Self-Advocacy Network to hold a self-advocate summit about community living. Autistic people talked about what living in the community means to us, and how we can help more people live in the community. This collects resources based on the discussions.

ORGANIZATIONS:

Applied Self Direction: Applied Self-Direction provides practical expertise intended to create and operate self-direction programs that run effectively and efficiently for individuals, states, managed care entities, Financial Management Services (FMS) providers, and other stakeholders.

Autistic Self Advocacy Network: ASAN was created to serve as a national grassroots disability rights organization for the autistic community, advocating for systems change and ensuring that the voices of autistic people are heard in policy debates and the halls of power. 

Community Drive, Inc.: Community Drive, Inc. is a knowledge-based practice dedicated to building support circles with individuals, families and agencies. This can include training, curriculum development, presentations, facilitation and consultation.

National Association of State Developmental Disability Service Directors: The NASDDDS mission is to assist member state agencies in building person-centered systems of services and supports for people with intellectual and developmental disabilities and their families. 

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