These points came out of a discussion by an Ad hoc group of consumers and advocates.  We feel that this represents an approach to the necessary solutions to many of the short-comings and frustrations we have seen in the current systems and some of the long term care goals we have yearned for in Illinois. It does not include every view point and building a broader coalition will help us to create a stronger state plan.  It does not set numeric goals or timelines to follow but is descriptive of particular consumer rights and principles to follow in designing the program.....

ILLINOIS STATE PLAN TO IMPLEMENT OLMSTEAD (Proposal from an ad hoc group of advocates and consumers)

We have looked at what some other states have proposed and developed some points that we feel are needed in Illinois. We are bringing this proposal to CIDA, because we feel that we need a concrete basis of unity and a starting point of shared goals to use in any negotiations with the state. It is not enough to get the state to commit to a change but then let them exclude the input of consumers and advocates.

The agencies of the state have a sad history of making decisions behind our backs and the results have been programs that are not well designed and in the case of the disability community contrived to splinter people into different interest groups and pit one against the other. Our participants involved people from various disability types although the psychiatric survivor advocates have not been present and we do not want to speak for them.
Below is an outline of points for a state plan that we have agreed are needed to implement Olmstead in Illinois.

I. Individuals must receive an evaluation based on a functional needs based assessment that is unbiased by disability type and age.

II. There must be a process that prevents institutional placement in the first place. Prevention or deflection means that all consumers have a thorough understanding of the available home and community based services. Current pre-screening activities have not worked.

III. The lack of affordable accessible housing that is integrated and not connected to the provision of services needs to be addressed in an adequate Olmstead plan.

IV. We want the high quality of care that is only possible with care givers who are paid a living wage, treated with respect and who have the right to organize themselves and to join unions.

V. Medicaid and/or state dollars must follow the individual. The current entitlement for institutional based services and limited access to community based services must end. We want a comprehensive approach that treats people according to their need and that is not based on 7 separate waivers. HCFA has said that it will welcome amendments to a state's waivers that comply with Olmstead.

VI. The programs created need to follow Person Centered Planning and find supports in the community tailored to the consumers needs. One size fits all will not do.

VII. Access to 24 hour services are necessary to have a full range of services that can substitute for institutionalization. Some states have payed a flat night rate for people who need periodic repositioning at night. Consumers on ventilators are currently able to get 24 hour care but there are a small number of other people who need this level of service to live in the community that do not have access to these services.

VIII. There must be access to a broad array of services to all disability types and not limited by the type of waiver. This array should include the following services but does not have to be limited to the ones listed.
A. Personal Attendant Services with the consumer hiring and managing their services and having flexible service plans
B. Home delivered meals
C. Home modifications
D. Independent case management
E. Assistive Technology and durable medical equipment (DME)
F. Emergency response
G. Homemaking
H. Emergency back-up service
I. CNA options
J. Respite care
K. Assistance with money management including representative payee
L. Assistance with child care by Personal Assistants
M. Training on meaning of consumer control and PA Management
N. Day care programs for adults

IX. We want an immediate freeze on the number of nursing home beds in the state and a plan for an ongoing reduction of nursing home bed slots in Illinois.

X. We want the state to produce a plan for closing institutions and state operated institutions that gives consumers various options in a home or community setting.

XI. We want a variety of payment systems which can provide maximum independence and consumer control to systems that provide high quality management support with consumer input.

XII. Consumers need to have a choice of service providers.

XIII. Consumers need access to culturally sensitive care providers. It is important that case managers, evaluators and service providers speak the language of the consumer being served.

XIV. There needs to be provisions (a buy-in) for access to services for people with jobs or incomes where they can not afford to pay for home services.

XV. People living in group homes must have the right to choose less restrictive environments.

XVI. Guardianships must respect the consumers rights to live in the most integrated setting appropriate to their needs.

XVII. The state must allocate much greater resources to help people leaving institutions. Pilot programs have been successful in developing successful transition programs but serve a minuscule number of people wanting help out of institutions. The state must help residents who have expressed a desire to leave the institution in a timely manner, while Olmstead allows waiting lists they are required to be actively moving. The transitions must be seamless with no gaps in service. This also applies to people leaving hospitals to live in the community where a delay in starting service can lead to needless institutionalization. A recent survey done in the city of Chicago found that 65% of the residents of nursing homes would prefer to live else where.

XVIII. The state needs to invest in self advocacy training that empowers consumers.

XIX. The comprehensive program of services needs to include one stop shopping for all consumers with long term care needs. We hear from consumer all the time that say they did know these services existed or that they had no idea where to go.

XX. Consumer involvement is essential in the development and implementation of the state plan. Consumers need an independent timely appeals procedure to address unreasonable decisions. Consumers need to be able to assist in the monitoring and have input on the quality of services being provided.