Update from the Olmstead working group that is drafting a state plan

The group is working on what a model plan for the state of Illinois should look like. We discussed various approaches and looked at what others had created and ended up building on what we had already brain stormed as basic demands and then started putting them into a frame work that made sense to us. Below we have the out line that we devised and then we also divided up the sections on the Freedom Clearing House blueprint, so we can start to answer the questions contained there to flesh out much more detail to add to the outline or skeleton we have now. We welcome comments and will try to make clarifications where the outline is still very broad.

Olmstead Plan

A. The Menu of Services that we need in Illinois
B. Creating Sufficient Housing Options
C. Prevention of Institutionalization
D. Protect the Rights of the Consumer
E. Evaluation and Assessments
F. Transitions from Institutions to the Community

A. The Menu of Services needed in Illinois

1. Help obtaining housing
2. 24 hour services
3. Peer counseling
4. Consumer directed community crisis centers for psychiatric survivers
5. Respite
6. Single entry point for all long term care services
7. Other services mentioned in points VII and VIII in the 4 page proposal from an Ad Hoc group of advocates and consumers such as: Home Delivered Meals, Home Modifications, Case Management, Assistive Technology, Durable Medical Equipment, Emergency response system, Adult Day Care, emergency backupservices, PA to assist in parenting, CNA care, etc.

B. Housing Options

1. Demand vouchers for all people being deinstitutionalized
2. State needs to create more affordable accessible integrated housing
3. Supports or services must be separate from housing
4. Consumers are educated on their Fair Housing Rights
5. State institutional facilities to be converted into community centers/ integrated apartment complex
6. Expand Home ownership programs
7. Diverse housing choices not restricted to certain geographic areas or neighborhoods
8. Expand home modification programs

C. Consumer Rights

1. Consumer control of services
2. Funds must follow the individual
3. Quality control mechanisms
4. Strong appeals procedures
5. Variety of providers available
6. Variety of payment systems for Personal Assistant services
7. Awareness of the menu of services
8. Informed Consent- self advocacy training and manual for each consumer
9. Informed of Fair Housing rights
10. Olmstead rights are superior to guardian rights

D. Prevention of Institutionalization

1. Prescreening approach hasn't worked
2. People must receive the level of services necessary to keep them in the community
3. End the use of arbitrary standards that steer people away from the community
4. State directive to doctors and hospitals that community placement must be the first alternative
5. Medical professionals must have evidence to recommend institutionalization
6. Consumers are presented quality community options before and at time of hospital discharge
7. End the dumping of people discharged from hospitals into nursing homes by managed care organizations as a way to get people off their rolls and onto Medicaid
8. Educate doctors on advantages of community placement
9. Impairment alone should never determine placement
10. Determination Of Need evaluation should never be part of prescreening - the focus must be on the rights of the consumer

E. Evaluation and Assessment

1. Institution residents must be evaluated given frequent opportunities to deinstitutionalize
2. Strong appeals processes must exist
3. Assessors must be aware of the array or menu of services available in the community
4. There needs to be an emphasis on knowledge of the benefits to health out comes and general happiness of community placement by evaluators
5. Re-evaluate tools such as the DON which require the consumer to drop a lot of pride to get the services that you need
6. Consumers need access to advocates that can defend them from institutionalization by state treatment professionals

F. Transition

1. Kids leaving education settings must get services to provide the services needed to go to a community setting. Currently the ball often is dropped and they go into nursing homes
2. Increased funding needed to help all who want to transition to the community
3. More agencies funded to do this work
4. Allow sufficient time to adjust to new setting (additional or extra services may need to be provided temporarily)
5. Every one deserves a second chance if the first transition attempt is not successful
6. Provide V.R. services in the nursing home
7. Provide comparable levels of services in the community

The process needs to be addressed as well. We stand by the principle that consumers must be involved in developing the plan. We are disturbed by the lack of committment shown so far by the lead agency on Olmstead.