Feature Issue on Self Direction

Alliance For Citizen Directed Supports board members from top left, Caitlin Bailey, Ly Xīnzhèn Zhǎngsūn Brown, Anita Cameron, Marian F-Saulino, Emmanuel Jenkins, Lateef McLeod, Priya Penner, Jamie Ray-Leonetti, Amanda Rich, DJ Savarese, Nancy Weiss

We all have the capacity to make the world a better place. We all yearn to be an essential part of something bigger than ourselves. We all want the freedom to pattern our own lives. For people with disabilities, that freedom is called self-direction. Not a choice. Not an option. A freedom.

How do we ensure that freedom for all people with disabilities? What are the biggest barriers to self-direction? How can real lived experience and disability leadership break down barriers to self-direction for all people with disabilities? What are we at The Lives-in-Progress Collective (LIPC) intentionally doing to ensure diverse disability leadership transforms the future of self-direction?

We are in the process of building a national disability collective formed from a grassroots network of diverse, multigenerational, cross-disability leaders. We are connected through an accessible online hub of grassroots endeavors, mentorship, collective discussions, webinars, interviews, and practical advice. LIPC will connect disabled adults with lived experience and expertise to those seeking to live full lives of their own design and model what’s possible in a world where the disabled lead and others offer the support we request. It will offer multiple diverse pathways and perspectives based on real lived experience and fast, easy access to the various resources, programs, and supports used by others who self-direct, creating an interdependent, ever-expanding support system that amplifies and sustains the work of currently siloed organizations.

The Lives-in-Progress Collective has three main components: a collective of disability leaders; a free accessible, online mentor network that has been created but is not yet publicly accessible; and a meeting ground for interdependent, ever-expanding connections.

Unique and innovative, the LIPC online resource will transform self-direction from a funding-based, agency-driven exception into a disability-led human rights initiative by 1) creating a national collective of leaders with disabilities focused on transforming self-direction; 2) foregrounding disabled leaders who are multiply marginalized and/or alternatively communicating while collaborating with non-disabled allies from other organizations; 3) paying disabled people for their expertise and lived experience; 4) offering multiple diverse pathways and perspectives based on real lived experience; 5) providing a national resource that allows individuals to build self-direction from the ground up; and 6) offering fast, easy access to the various resources, programs, and supports used by others who are self-directing. We expect to begin a formal demonstration phase soon and are beginning to recruit participants for that phase.

The online resource allows users to search mentors by name, state, keywords, and disability. Imagine you dream of being an artist. You search artist in the keyword search. Up come 37 diverse artist mentors whose advice you can access. Or imagine you want to start a business or nonprofit. You can type in entrepreneur and pick and choose from 30 entrepreneurs across the country.

Each profile contains the mentor’s name, pronouns, contact information, self-identifying characteristics, such as ethnicity, profession, and disability, and links to resources and captioned videos available online.

What’s Working

We believe strongly that people with disabilities should define what’s possible in our own lives, that we need flexible supports, paid and natural, that offer us a sense of interdependence. This is best achieved by paying diverse people with disabilities for their expertise and lived experience, by centralizing siloed resources in a way that still honors grassroots networks and by expanding self-direction exponentially by empowering the individual while also naming and uprooting systemic racism.

By creating a centralized resource of diverse, documented lives-in-progress, we redefine what constitutes success; collectively show our leadership is strong; allow people to efficiently research and choose for themselves who to get what advice and resources from; and foster personal and professional connections between disabled allies while honoring and amplifying grassroots, local endeavors both with and without public funding. Meanwhile, mentors benefit from camaraderie, added income, and publicity for their own businesses.

Barriers

Most organizations do not have leaders who look like us. Systems don’t engage with us, they manage us.

LIPC values and demonstrates diverse leadership. Rather than managing people, we believe leaders should support people in their shared goals in the face of uncertainty.

The Collective is led by the board of directors of the Alliance for Citizen Directed Supports, the 250-plus mentors on the LIPC online resource, and by anyone who is seeking to self-direct their lives. Nearly two-thirds (63.5%) of our board members are from historically marginalized racial or ethnic groups, use augmentative and alternative communication devices, and/or have intellectual and/or developmental disabilities (IDD). The online resource is currently populated with more than 250 cross-disability leaders, over half of whom identify as multiply marginalized, a quarter of whom identify as people of color, about 7% as alternatively communicating, and 11% as LGBTQ+. Trained, paid mentors will be people with IDD diagnoses who self-direct. Priority will be given to those who represent a marginalized group with disabilities. Each one will conduct a paid webinar, interview, and consultations based on their lived experience self-directing. Thus far, 92% of the monies spent on this project have been paid to people with disabilities from underserved racial, ethnic, or cultural communities, including Ather Sharif, the specialist who designed and built the online resource. Pending funding, formative evaluations of LIPC’s racial equity will be done in collaboration with a national research team. Research questions and interests will be based on a panel of people with disabilities from diverse racial and ethnic communities, some of whom are AAC-using or have diagnoses of IDD.

HIPAA rules make it hard to access anyone wanting to self-direct, those wait-listed for community- and home-based waivers, and/or those stuck in congregate care facilities unaware of what’s possible for them. This is another significant barrier.

LIPC will ensure we are marketing to a diverse population by:

1. Asking our well-connected board members to share on social media, with the various organizations for/with whom they work, and with any other community organizations where they live.
2. Networking with schools I have worked with in the past during my Inclusion Shouldn’t be a Lottery Outreach Campaign (https://www.newday.com/films/deej).
3. Approaching self-advocacy groups.

Another barrier is that people with disabilities have internalized ableism and exceptionalism.

LIPC will offer classes that teach tools people can use to increase inclusive opportunities within their communities and eradicate and change negative self-images. The classes will create community and connect people with mentoring consultants who are further along in their areas of interest.

Funding to expand our free, accessible resources is another barrier.

With a small budget, LIPC will continue to move forward slowly and focus on proving its efficacy by:

1. Asking partnering organizations to fund and support fully accessible webinars led by LIPC leaders.
2. Partnering with a national organization to qualitatively assess LIPC’s effectiveness and racial equity.
3. Having the director volunteer his time and cover his living expenses doing other work.

More challenges

As we move forward, we are grappling with even more challenges. How can we best maintain a free, accessible, up-to-date resource hub while securing the privacy of mentors and financially maintaining the infrastructure necessary to respond to inquiries in a reasonable amount of time?

How do we offer site visitors a sample of what is available with full access?

How can we dovetail our self-direction tools and processes with the current waiver and adult service systems?

These are significant questions, and we will find the answers.