Independent Living Words of Power: Comments to the ILA

In preparation for the CILs’ administrative move to the the Independent Living Administration at the Administration for Community Living at the Department of Health and Human Services, we wrote expanded definitions of key words used in the Workforce Innovation & Opportunity Act. The advocates who created Centers based on IL philosophy would be disturbed at the current “re-interpretation” of their words by Michigan CILs. Please send your comments to add or edit the definitions.

Language: conveyor of philosophy and culture 

Significant Disability: The Act repeatedly says “significant disability” to distinguish it from the broader term “disability” and focuses the services and resources on the individuals who have historically been the most segregated and least independent. They, people with significant disabilities, are the most qualified to direct and deliver IL services, because their lives depend on the same systems, and they have developed a skill set interacting with systems that will empower others.

Consumer: For the purpose of the Rehab Act Title VII, consumer means a person whose ability to be independent in the community, in their home, or at work, is substantially reduced by a mental, physical, sensory, developmental or other significant disability. Consumers with significant disabilities use equipment or other accommodations that support access and participation at home, the community, and employment. Consumers frequently have personal experience utilizing the publicly-funded systems intended to support the Disabled. Systems are often designed to be person-centered, but too frequently keep the Disabled poor and dependent. This knowledge and experience is necessary for the provision and administration of core services. 

Consumer-control: IL philosophy is clear: the individual has the right and responsibility to make decisions based on their goals; and individuals with disabilities must have the support to speak and act on their own behalf. Centers are unique because the peer model connotes that the person served is also the person providing services; at all levels of the organization, consumer experiences lead the service priorities and processes.

Community-based: In regard to CILs, “community-based” means the Center is part of the local disability community and works in cooperation with the community to influence both the capacity of individuals with disabilities to lead independent, self-determined lives, as well as, the greater community’s capacity to integrate people with disabilities in all aspects of community life. Centers must demonstrate a commitment to “invest power and authority in the consumer,” which means they are informed by the experiences of the local disability community and collaborate with the community to set goals and priorities.

Cross-disability: is an IL value built on the premise the disability experience, regardless of the individual’s diagnosis or type, is  based on social, environmental, or cultural barriers to independence and self-efficacy. Centers use the shared experience of the local disability community to address those barriers instead of trying to ‘fix’ the individual so they can ‘overcome the barrier.’ To address barriers effectively, Centers must include the knowledge and experiences of all categories of disability and Centers themselves must reflect, at all levels, the diversity of the disability community.

Transition: is claiming or reclaiming the right to determine what kind of life you want and building the services and supports to achieve your goals. Transitions happen naturally in our lifetime, but the Disabled often encounter experts who want to make decisions for them because of a perceived vulnerability and dependence. Centers provide IL skills training. Advocacy, information and referral, and peer support as a means of empowering individuals to control transition decisions.

IL Skills Training: is knowledge and skills to operate in an occasionally hostile environment, including systems and service staff that coerce or manipulate the process to give you what they want you to have versus what you choose as the most beneficial to support your goal. Consumers need disability rights information, but also need to know how to articulate their priorities, advocate, and negotiate. Many consumers are dependent on services and supports to live, literally, and need the empowerment derived from being part of the disability community. Belonging equals power and pride.

Information and referral: is more than a list of community resources which is available in many forms. In IL, consumer means an informed decision-maker and I&R at a CIL means all the information needed to access those resources. Many service systems rely on ignorance as a screening tool. In a Center, a consumer would receive information about who is eligible, what recourse is available if denied, what processes are available when designing your service plan, and when can you exercise choice in frequency, duration, and provider of funded services. Centers use I&R to prepare consumers to be self-advocates.

Peer support or peer counseling: is a self-help principle founded on the practice of sharing personal knowledge and experience to aid a member of your community in developing their own strategies for managing a problem. It assumes that a group of individuals with disabilities has expertise using disability services / supports, dealing with public spaces, and using disability rights processes; the learned experience of peers is equally or more important than the knowledge proffered by specialists.

Advocacy: is action designed to change the current position, perception, attitude, policy, or practice, that creates a barrier to independence and self-determination for an individual or a group of individuals. Individual advocacy results in change for a specific person and problem. Systems advocacy results in a change that impacts everyone using that public service, agency or program.

CILs are meant to engage in consumer-driven advocacy. We support a definition that makes clear that advocacy funded by IL dollars must be responsive to the disability community it is meant to serve.

What does the Independent Living Administration (ILA) need to know to administer the Independent Living Program funded with State and Federal $$$$. Tell them!

Submit comments to the ILA online by January 15, 2016!

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