you for the opportunity to present before you today

But with one catastrophic illness or injury their insurance capped out. They reached their lifetime limit of $1,000,000.00. They soon depleted their savings accounts. They could not go back to their former employment because of real or perceived limitations. They depended on their families for as long as possible, but the strain was too much on families who had both spouses working and children to raise. Or, because of the mobility of individuals there often is no family member within close proximity to provide care.

The other group is individuals who are born with severe disabilities. They have a 78% unemployment rate. They are most likely to be eligible for services.

And so for many individuals, the only option is to look to the state for support. The options the state has are entitlement services in institutions, where study after study has proven that costs are higher than community based services, or Home and Community Based Services (HCBS) Waivers. These are programs that support individuals in the community and the state “waives” serving people in institutions so long as the state can prove that it remains less costly in the aggregate for people to get services in the community.

HCBS waiver services are not entitlement programs and so, large waiting lists have built up over the last ten years. People are waiting an average of six months on the PD Waiver to get services. Some die waiting, some get worse due to lack of care and some use informal supports until that runs out and they wind up in a nursing facility with much greater needs and more cost.

We’ve heard suggestions about using volunteers or neighbors to provide needed home and community-based services. Imagine how you’d feel about waiting in bed for a volunteer or a neighbor to get you out of bed. If they didn’t feel like coming, you are stuck in bed all day and all night. Most of us don’t even invite our neighbors into our homes anymore. Imagine having to ask your neighbor to assist you in getting on and off the toilet.

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.

KACIL suggests that in this time of budget crisis, we 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 that move us toward independence, not nets that trap and keep us in costly programs.

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. CONTINUE AND EXPAND THE MEDICAID BUY IN PROGRAM

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. According to the Working Healthy program, as of January 2nd, 2003, 510 Kansans are taking advantage of the program which began last July. 56% of those people are paying a premium for their coverage. Most were not previously working and now are paying taxes.

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 for this program. That means that people who use wheelchairs or need an assistant for other reasons cannot use the program yet. When we can include personal assistance as a covered service, the number of people using the program will increase dramatically. That’s good news. That means they’ll be working and paying taxes. They’ll be paying premiums on their medical card.

One of the main barriers to including PAS 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 40 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 Social Security Administration 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 40 hours per month.

2. REVIEW FUNDING SOURCES FOR PEOPLE WITH DEVELOPMENTAL DISABILITIES.

There continues to be 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. There must be more freedom for people with developmental disabilities to take risks without the provider agency being held responsible for all actions of consumers. People learn from their mistakes, yet for people who we assume have the most difficult time learning, people with developmental disabilities, don’t have that option. We reward protection and control and by doing so, minimize the individuals ability to learn, grow and become more independent.

KACIL is working with Kansas University, SRS, Community Developmental Disability Organization’s and Self Advocates Coalition of Kansas to look at ways to create more self directed programs for people with developmental disabilities. We received a grant from Health and Human Services under President Bush’s New Freedom Initiatives. We have high expectations that we can be successful in identifying some of the barriers that keep people in programs and do not encourage outcome based services.

This grant only deals with services for attendants. We hope that SRS will review all regulatory language and create ways to ensure people have the greatest opportunities for success and that providers of services are rewarded for outcomes.

3. TRANSITIONAL LIVING SERVICES UNDER THE PD WAIVER.

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.

However, we continue to identify the need to allow individuals to keep their medical card for health care needs. If we don’t create that option, people will not be able to leave the services. The Medicaid Buy In program could be a model for how to implement this option.

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.

4. DOLLAR FOLLOWS THE INDIVIDUAL FROM INSTITUTIONS TO THE COMMUNITY.

This concept is based on the Olmstead decision by the Supreme Court which says that services should be paid for in the most integrated setting. If people with disabilities who are in facilities can benefit from and want to receive services in the community, they should have the option of moving to the community.

Currently there is about a six month waiting list for home and community based services. Even though she has restored cuts made in the SRS budget, the Governor’s ’04 budget for HCBS has no new dollars to decrease the size of the waiting list. So we can anticipate it increasing substantially.

There is no waiting list for institutional services. If you are in an institution, the state is paying for your care already, on an average, at a greater rate than what would be required for services in the community.

This concept would allow people to move to the community and the dollars would follow them without having to wait on a waiting list.

It is very difficult to become independent of the system while living in the community. Your Public policies such as Medicaid Buy In and HCBS Waivers have made it easier.

Over a year ago, the State of Kansas was awarded a Real Choice Systems Change grant from HHS for $1.4 million dollars. The purpose of the grant is to redesign long term care service delivery system. The grant could address waiting list issues and design a better diversion program before entering a N.F. It should also address the implementation of the Dollar Following the Individual.

It is impossible to become independent from a Nursing Facility Bed. Please study the benefits of the Dollar Following the Individual to free people who want to move home.

Both Texas and Missouri have passed similar laws.

5. REVIEW WITH INSURANCE COMMISIONER METHODS TO MAKE PERSONAL ASSISTANCE SERVICES AVAILABLE, AFFORDABLE AND ACCESSIBLE THROUGH LONG TERM CARE AND OTHER INSURANCE POLICIES.

As our population grows older and as Medical Science becomes better at keeping us alive and saving us from accidents, illnesses, the need for Long term Care will only increase. We have done a dis service for years by talking about Personal Assistance Service and Long Term Care as something outside and separate from the realm of Health Care. And so we considered it only for elderly and disabled.

We now need to redirect our efforts to consider Long Term Care including, but not limited to Personal Assistance Services as Health Care.

We need to work with Insurance companies, the State, consumers and advocates to identify the barriers to getting and keeping Long Term Care Insurance today, and develop methods to make it more affordable, accessible and desirable to people.

As the population of “Baby Boomers” grows older, they want to “age in place.” That is they want to remain in their homes and continue to be contributing members of society. Medicare won’t pay for all the costs. Medicaid as we’ve seen is killing the State budget.

But Long Term Care Insurance is unaffordable for people who are just making ends meet. It many times is very limited in the services and length of time it will provide those services.

Surely there is a way to solve these major obstacles to people getting the care they need so they can remain at home, if they choose.

Let’s create some method of getting everyone to the table to address the issues and develop a plan.

6. REVIEW POTENTIAL FOR INCREASING THE ELIGIBILITY FOR OBTAINING HEALTH INSURANCE THROUGH THE MEDICAL CARD. IDENTIFY METHODS WHICH WOULD ALLOW PEOPLE TO PAY PREMIUMS BASED ON INCOME.

Without health insurance, many individuals will continue to use costly programs such as waivers and institutional care. With access to medical cards, we believe many individuals would not need other services.

This could also be considered for individuals who are now called the ‘working poor’, or people who cannot afford traditional health insurance, but could pay a premium to a larger pool and have health care.

These seven 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 Independent Living 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.

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