Personal Independence Commission

April 29 and 30, 2002

Minutes

Monday, April 29, 2002

Kirsten Dunham called the meeting to order.

Approval of Minutes:

Lt. Governor Maxwell moved that the minutes from the April 1^st meeting be approved.  Ann Jackson seconded the motion.  Motion carried.

Commission members will need to fill out Financial Disclosure forms for the Ethics Commission.

Public Comment:

Fred Lang, Office for Civil Rights.  OCR has been working with Missouri since 2000 on their Olmstead plan and has resolved several complaints relating to Olmstead.  They still have several complaints to be resolved.  OCR is committed to working in partnership with the state.

Julia LaBlanc and Shauwna Dunaway, Missouri Rehabilitation Center.  Shared information about a pilot program in Springfield they are implementing to partner with agencies to implement Olmstead.  The project looks at the barriers facing people when they want to transition back into the community.   This includes a computer network linking agencies so they can provide better services; the case manager and treatment team follow the person all through the process; use of a universal form for all the team members involved with each team member having a section to fill out.

Rob Honan, Olmstead Stakeholders Group.  The OSG has selected priorities to be presented to the PIC.  These are: (1.) Informed choice - consumer input; (2.) Community linkage - interagency coordination, streamlining the system; (3;) Quality assurance and research.  Other broad priorities: Efficient, affordable transportation; Affordable, accessible housing and Medicaid reform.  These can all be related to the Real Choice Systems Change Grant. 

Deb Herbst, parent.  Related her experiences as a parent, advocate and professional.  Feels there are unmet needs of a large number of the disability population.  Because of these unmet needs this portion of the population will not benefit from the implementation of Olmstead.  Had several recommended priorities:

1. Preparation of all children with disabilities for adulthood must start in adolescence and childhood involving DESE, Division of MR/DD, Department of Social Services, Div of Family Services, Div of Medical Services, Div of Public Health and other agencies
2. The education of all Missouri students with disabilities must improve especially in the areas of early identification, appropriate diagnosis with emphasis on pro active and preventive diagnostic judgment; Individualization of services and supports; Development and implementation of positive behavior support plans; Inclusion with typically developing peers to the maximum extent that is beneficial to the child; Early transition planning program development; Improvement in education and continued training of regular education teachers about specific disabilities and in the area of special education teachers in inclusion practices; Training of special education teachers in the area of nationally and international best practices and the letter and spirit of the law
3. Children in adolescence with cognitive, social, emotional, sensory, attentional and mental illness disorders must be identified, educated, supported and directed to allow them to grow to their maximum potential and level of adult functioning
4. Adequate support of the families
5. support of individuals with the above disabilities must continue into and throughout adulthood as appropriate to the individual's needs
6. Increased awareness of training regarding the above types of disabilities
7. Activities to increase public awareness of the types of disabilities
8. Increased risk of secondary problems for individuals with the above types of disabilities

Also expressed concerns about physical restraint and punishment of children with disabilities in the school system.

Duane Gruis, Independent Living Specialists, Paraquad.  Expressed concerns about the guidelines for someone being able to control their services.  In order to self-direct the person must be functioning at a certain cognitive level.  There are people on the program who are able to live in the community now but due to a progressive illness may not be able to in the future. Would like the Commission to support legislation that would allow the PAS Program to allow the person with a disability to designate another family member to assist with management or take over the management of the program if the person with the disability is no longer able to do so.

Michelle Steger, ADAPT, St. Louis.  Had four priorities for the Commission:

1. The Commission will support MICASSA
2. Look at Texas.  Texas is the only other state that has "money follows the person" language in their legislation.  Have moved over 400 people out of institutions
3. Look into de-certifying empty beds in nursing homes.  That money could serve people in the community
4. Try to move some people out along the way

Sheila Nichols, parent.  Has helped families set up services.  Has lived in different areas of the state and has seen a wide spectrum of available services.  Had to put her son in the Nevada Habilitation Center because they were unable to get services.  Addressed the lack of supports for families in Missouri.

The group adjourned for lunch.

Linda Allen, Division of Medical Services, gave a report on a program intended to place workers in hospitals to let patients know their options.  Will identify which hospitals have most nursing home placements and start with them.  Talk to people when they are admitted and talk to them and their family about their options.  Plan to also assign workers to nursing homes.  Would be responsible for reviewing all admissions to nursing homes and would look for red flags.  Would like to be able to show reason why each person enters a nursing home.  Also hopes to have data as to what services were needed that were not provided, such as housing, transportation, etc. 

Missouri Results Initiative Facilitated Process:

Quinton Wilson from the Governor's Office facilitated ranking of the 76 recommendations from the final report of the previous Olmstead Commission.  The recommendations were ranked according to their impact and achievability.  See attached chart.

Tuesday, April 30, 2002

Real Choice System Change Grant Discussion

Robin Rust reviewed the grant with the Commission members and answered questions about the grant.  Since another grant application was not awarded, the Commission agreed to shift money in the RCSC grant to fund Transition to Independence Grants for 100 people with a maximum of $1500 per grant.  Ron Vessell and Linda Allen will work on developing the grants with input and consultation from community members that have helped people transition out of nursing homes.  The RCSC grant also has money for demonstration projects to identify more effective ways to meet the goal of community integration.  A subcommittee including Kirsten Dunham, Anne Jackson and Robin Rust was formed to write the RFP for the demonstration project.  They will bring a draft for the Commission's approval at the next meeting.

A group of state agency representatives and community advocates have been meeting to develop the Informed Choice Training.  They plan a pilot training in July.  A portion of the grant money may be used for training expenses such as materials, travel, etc. 

Medicaid Spenddown

The Commission members discussed how the proposed change in Medicaid spenddown would negatively impact efforts to implement Olmstead.  If people with disabilities and seniors could no longer afford health care and attendant services, many will be forced in institutions.  Juan Samaniego made the motion that the PIC take a position that spenddown should remain in its current form and that the PIC should send a letter to the budget conference committee urging them to take the House position on spenddown.  Mary O'Brien made the second, and the motion carried.