What is an independent living center?

What is an independent living center?

Access Living, located in Chicago, one of the original and largest ILCs in the country.

Access Living, located in Chicago, one of the original and largest ILCs in the country.

It was sometime in 2008 and I was in the full throws of domestic nesting, having just gotten married the year before, when Andrew and I agreed that maybe it was time to see about getting me some additional help around the house. Not a lot mind you, just a few hours per month to help with some of those "extra" projects. As most people do, I went to Google to see if there were any local resources.

I came upon a link to the "Silicon Valley Independent Living Center," who at that time according to their website, provided contacts for non-personal, non-medical attendant help. Basically, people who were willing to volunteer their time for disabled folks who needed an extra hand with things like grocery shopping, errands or other domestic tasks. While I did not end up hiring anyone from their resource list, just learning of SVILC, and the existence of Independent Living Centers in general, changed my life forever.

CID Staff at Community Outreach Event

CID Staff at Community Outreach Event

Contrary to how it might sound, Independent Living Centers (ILCs) are not group homes or residential living facilities for disabled people. Rather, as is the case in my home state of California, an independent living center is a consumer controlled, community based, cross disability, nonresidential private nonprofit agency that is designed and operated within a local community by individuals with disabilities. SVILC is one of 28 ILCs in California and one of 403 nationally.

While every state runs their ILC programs somewhat differently, the core mission of all centers is to provide services that maximize the ability to live independently in the environment of their own choosing. The services are mandated by the Rehabilitation Act of 1973, as amended, Title VII, Chapter 1 and H.R. 803 - 113th Congress: Workforce Innovation and Opportunity Act: Information and Referral, Advocacy, Independent Living Skills, Peer Counseling, and Transition. California added two additional core services: Personal Assistance Services and Housing. ILC's also provide individual assistive technology (AT) services to consumers.

At the bottom of this post are a list of the core services CA ILCs provide, as well as some additional resource links.

In learning about SVILC I became engaged with the disability community in a way I never had prior. I met many disabled people, leaders in our civil rights movement, and became exposed to a disabled history and culture that I never knew existed. I volunteered for several months with SVILC and then eventually was hired part-time as their marketing and communications specialist. Shortly after leaving SVILC I was invited to serve on the Board for the Center of Independence for Individuals With Disabilities (CID) which serves people one county north of SVILC. I've been on the CID Board for going on five years now. It is some of the most fun and rewarding work I have ever done in my life.

CID staff at NICL conference.

CID staff at NICL conference.

Part of my mission is not only providing governance as a board member, but also helping to get the word out about Independent Living Centers to the larger population. I think there are a lot of disabled people like myself who don't have any idea that they even exist, to say anything of the many assisting services they provide.

There is no doubt that being disabled can be challenging. With all of my positive self-love talk about disability pride, I am not obtuse enough to see and accept that life can be hard for us. There are social, economic, physical and institutional barriers that prevent disabled people from achieving full and equal access. Which in turn keeps many of us from achieving our full potentials.

That is where resources like ILCs come in. They provide the tools of education, community and advocacy. Their mission is infused with self-empowerment for disabled people. They don't advocate on behalf of an individual. They empower the individual to advocate for him/her self.

I came to realize a couple years into my emersion into the Independent Living Community that I've always lived my life in line with the IL mission and values. I just didn't realize it at the time. I was living a parallel life in full step with a movement that had preceded me by decades, and I hope will continue to flourish for years to come.

For more information, check out these resources:

Cores service and explanations are listed below:

Information and Referrals (I&R)
- Information and referral is the art, science and practice of bringing people and services together. If individuals or families don't know where to turn, or need more information, I&R can help connect them with the information, tools, and resources they need.

- ILC's provide services around both individual and systems advocacy. The goal is to empower people of all ages with disabilities to reach their highest level of achievement by teaching them to advocate for individual and systems changes that result in access, choice, equality, inclusion, integration and independence. Systemic advocacy attempts to change laws and attitudes surrounding disability. Personal advocacy is a type of problem-solving designed to protect personal and legal rights and ensure a dignified existence.

Independent Living Skills
- ILC's provide information and instruction which lead to mastery in the following areas: health and safety, community resources, meal planning and nutrition, self-advocacy, sexual awareness, Personal Assistant management, household management, recreation and leisure, and money management. The integration and full participation of individuals with disabilities into the mainstream of society is the desired outcome.

Peer Counseling
- ILC's provide support and role models for people who want to live more independently. Personal experience with disability often places ILC staff in a unique position to understand and effectively teach people who experience disabilities while providing a role model for success.

- ILC's provide services that facilitate transition from nursing homes and other institutions to the community, provide assistance to those at risk of entering institutions, and facilitate transition of youth to postsecondary life.

Personal Assistance Services
- Many persons with disabilities require personal assistants (PAS) in order to live independently. PAs assist consumers with a wide variety of duties. Depending on the individual, these activities might include getting up and getting ready for the day, bathing, dressing, cooking, cleaning or running errands. Some people also use PAS in the workplace. Examples of PAS in the workplace vary, but may involve activities such as retrieving materials out of reach or providing travel assistance for an employee with a mobility impairment; helping an employee with a cognitive disability in decision-making; reading printed materials to an employee who experiences a visual impairment; or ensuring a sign language interpreter is present during meetings. ILCs can help connect people to qualified PAS and teach them how to manage these important employees.

- ILC's offer one-on-one assistance to qualified consumers to help them locate affordable and accessible housing, as well as to find residential supports and accessing programs and services for which they may be eligible.

If you want to check out a video I made where I talk more about the Center for Independence of Individuals with Disabilities, the Independent Living Center I volunteer for, you can watch it by clicking on the image below!

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