Thank you for the opportunity to present to you today regarding the philosophy of independent living. I am Josie Torrez and I work for the Kansas Association of Centers for Independent Living (KACIL).

KACIL represents the 13 Centers for Independent Living (CIL’s) around the state. Our mission is to coordinate efforts within Kansas, the United States, and internationally to the extent that these efforts will further independent living for all. KACIL will advocate for the civil rights of Kansans with disabilities, regardless of age.

CIL’s are community based, not for profit organizations that have federal and state requirements that their governing board and a majority of all staff be persons with disabilities. This concept is known as consumer control.

There are 13 CIL’s in Kansas and each provide at least five core services, information and referral, peer support, independent living skills training, deinstitutionalization and systems and individual advocacy. Each CIL, based on input from consumers in their community and direction of their board may also provide other services, including, but not limited to payroll agents for self directed services under the HCBS waivers, assistance and advocacy for transportation, housing, employment, education, recreation and other areas as defined by people with disabilities in their area.

Unlike other organizations who focus on a particular disability or age, CIL’s provide assistance to people with all disabilities and all ages.

The independent living movement, which is responsible for the development of CIL’s was an outgrowth of the civil rights movement. The idea was that we look at disabled people differently than we had in the past. The following chart describes the change ion thinking that the Independent living movement proposed and still supports. (See Chart A)

The Chart

I.L CHART: THE DIFFERENCE

	REHAB MODEL	I.L. MODEL
Definitions Of Problems	Physical or mental impairments; Something is wrong with the person	Dependence of professionals, family members and others and environments; lack of legal protections or recognition of inherent worth of disabled people.
Locus Of Problems	In individual (who is broken or sick and needs fixing or curing.	In environments and perceptions.
Social Roles	Patients, clients, charity recipients, non-existent.	Family and community members, customers, co-workers, advocates, same as anyone else.
Solutions To Problems	Professional and volunteer interventions and treatments.	Equitable employment, political, educational, and cultural options.
Who Controls	Professional and / or volunteer.	Individual or group of individual’s choice.
Desired Outcome	Fit into the program No social misfits.	Employment, housing, community involvement, same as everyone.

It is our opinion that the State, in an effort to maximize federal funds, has made “Medicaid Junkies” out of many people with disabilities and families. Just as with the welfare system, we have designed a safety net that traps people and makes them believe they can do little to improve their situation.

We suggest that in this time of budget crisis, we begin to revisit the chart and determine what we can do to empower people, rather than trapping them into dependence. Advocates, consumers, the state and legislators need to work together to develop solutions that are based on the dignity and ability of disabled people, not on their deficits.

We need to redesign systems so that they provide supports when needed and teaching tools whenever possible to minimize or eliminate dependency on the system and maximize independence.

Our hero in the independent living movement, Justin Dart Jr. said that “Empowerment is when we say no to the primitive illusion that society, government, the free market; the public media are some sort of paternalistic super gods that can give us truth, equality and prosperity.”

Our freedoms will come not only when we are released from nursing facilities, but when we are employed with health care and do not have to worry about our services being cut because the state is short of funding. We, the disabled community must work with you to change systems that discriminate, and minimize us and we must work together to ensure that systems are there as supports, not nets.

How do we accomplish these grand objectives? The answers will not be achieved today or tomorrow, but we can take steps to the solutions. KACIL recommendations include:

1. This legislature is to be commended for the great success of the Medicaid Buy In program where people have the option of returning to employment and can keep their medical card for health insurance and pay a premium for the card, based on their income. Over 600 Kansans are taking advantage of the program which began last July.

SRS and advocates have been working together but have been unable to include Personal Assistance services as an optional service that people can use under the medical card. That means that people who use wheelchairs or need an assistant for other reasons cannot use the program yet. One of the main barriers is that the federal government will not allow the State to define “work”. We are advocating that the definition of who is eligible to receive PAS under this program be people who work in an integrated work setting for at least 20 hours a month.

Without that definition, a person on the waiting list for HCBS services could apply to the Medicaid buy in program, work one hour a month and be eligible for PAS services. As advocates we recognize that would put the budget in danger and we are opposed to such a situation. We will advocate for a change in Federal Regulations, but we ask that this body write to our Senators and Congressmen and to CMS and to SSA and request that they allow for a definition of work as part of the Medicaid Buy In program that will define work as at least 20 hours per month.

2. Review funding sources for people with developmental disabilities. There is a strong disincentive for people with mental retardation and other developmental disabilities to become independent. The majority of all funding is tied up in matching the waiver using Title XIX funds. The regulations written around that funding source give very little options for community providers to be reimbursed for teaching people to become independent. Rules and regulations encourage and support dependency models.

KACIL recommends a review of programs that were implemented by community providers prior to the development of the current funding systems. There were programs out there that fostered independence. Direct SRS to provide funding for model programs that are effective at promoting independence. They work, but they must be funded. KACIL believes that current funding can be used. It will require a change in regulations and in thinking.

We must also look at the invasive and sometimes discriminatory regulations used as part of the DD Reform Act that prevent Community Based Agencies from being reimbursed for providing real integrated services for people with developmental disabilities.

KACIL has discussed the option of adding a service called transitional living to the PD Waiver. This service would allow the opportunity for people to receive training for a period of time to learn to complete tasks for themselves and then complete waiver services. This will not work for every individual, but we believe that some people could reduce their hours of Personal assistance services and some may even be able to leave waiver services.

By offering transition services to people for 6 months with the intent of teaching them to do tasks themselves or getting OT or PT evaluations to determine equipment which would allow them to do tasks themselves we will be helping people off the system instead of teaching them to be dependent on the system..

These three important recommendations will move people with disabilities to less dependence on the system that will and can not always be there. We as a disability movement will never be free and equal as long as we depend on “other people’s money”. The I. L. philosophy is one of consumer control, not government control. KACIL wants to assist in any way we can to offer incentives and support to assist people with disabilities to achieve the same American dream that we all have.

Thank you for the opportunity to present to you today. I would be happy to stand for questions.

Click here to return to KACIL home Page