Minutes for October 14, 2004

Meeting Location: Four Points Sheraton Midway, St. Paul

Present:  Lois Johnson, Karen Larson, Sharon Johnson, Mary Pennington, Ann Zick, Phyllis Coppess, Barbara Chromy, Roberta Cich, William Bauer, Bradley Westerlund, Bryan Jensen, Gloria Lafriniere, Mark Eggen, David Hancox.

Absent:  Mary O'hare-Anderson (excused), Linda Lingen (excused), Roseann Faber (excused), Joan Willshire.

Call to order: The October 14, 2004 meeting of the Statewide Independent Living Council (SILC) was called to order at 9:00 a.m. by Lois Johnson, chairperson. Introductions followed.

Approval of September Minutes and October Agenda: Ann Zick asked that her abstention on the APRIL Conference vote be noted in the minutes. There were no additional requests for revisions. Ann Zick moved, Phyllis Coppess seconded, that the September minutes be approved as amended. There was no discussion, and the motion carried.

Lois Johnson called for additions to the October agenda. The CMS Olmstead Conference was added at 2:15 p.m. There were no other requests for revisions, and the October agenda was approved by consensus as revised.

State Rehabilitation Council for the Blind Report:  Due to Roseann Faber's absence, there was no SRCB report.

Developmental Disabilities Council Report: Ann Zick reported that the DD Council met on October sixth.

The Administration on Developmental Disabilities awarded a 5 year grant to the Minnesota DD Council for a Family Support 360 project to be located in the Jordan neighborhood in north Minneapolis . The grant totals $250,000 per year. The Council will issue a Request for Proposals to eligible organizations to carry out the work plan required by ADD.

The Council worked with the State Demographer's Office in the creation of a resource which uses 2000 Census data on the number of people with disabilities and employment status. This link is called "DataNet," and allows users to create a map to select features such as age groups, disability, gender, and employment status; one can then select the geographic level such as state, county, zip code, city and township, census tract, and block group. This feature is now on the Council web site. There are instructions to assist users.

The third e-learning course is now available for beta testing on the Council Partners in Policymaking web site. The third course focuses on inclusive education, the laws, the IEP process, and advocacy tips. To review this site, go to: www.partnersinpolicymaking.com

CIL Report: David Hancox reported that the CIL directors recently held a meeting in St. Cloud, with the primary discussion topic being the upcoming legislative session. A legislative packet is in the works which focuses on the savings provided to the state via CIL nursing home transitions, as well as the savings realized by preventing people with disabilities from entering nursing institutions through CIL services. The legislative packet will also assist Centers in regaining resources lost during the 2002 session.

The centers are preparing informational brochures on requirements for people with disabilities who want to move out of institutions and into the community. This brochure will also identify Centers as a resource for relocating.

There will be a community-wide forum on December 15-16 regarding Olmstead, mental health issues and relocation, as well as the "roll out" of the recent five-county housing study vis a vis affordable, accessible housing in Minnesota.

Several organizations are co-sponsoring this two-day forum. Attendance will be limited to 250 participants.

December 2004 Meeting: Lois Johnson announced that she would entertain a motion to move the December SILC meeting from the ninth to the fifteenth and sixteenth to permit SILC members to attend the Olmstead forum. Bryan Jensen so moved, and Karen Larson seconded. There was no discussion, and the motion carried with David Hancox abstaining. Brad Westerlund will coordinate SILC members' registrations and hotel reservations. There are ten accessible rooms at the Northland Inn where the forum will be conducted.

State Rehabilitation Council Report: Lois Johnson reported there was a speaker from ODEP at the last SRC meeting. There was a large number of people in attendance, but little business was conducted due to the speaker.

It was asked whether a report was prepared on last month's SRC forum. Minutes from this public forum are not finalized to date.

State Council on Disability Report: Due to Joan Willshire's absence, there was no report.

121 Project Report: Gloria Lafriniere announced that the White Earth 121 Project's RSA five-year grant was renewed. Red Lake's grant was also renewed. Nationally, only two 121 Projects' grants were not renewed -- one from Alaska and one from Nevada. She reported that her project has been collaborating with Freedom CIL and the State Rehabilitation Council on Olmstead issues. The White Earth 121 Project has had 537 applicants in the past five years.

Gloria Lafriniere reported a situation involving a person with a disability who was advised by a county employee to "move into a nice nursing home" because this county is "poor." Discussion followed.

The White Earth 121 Project is receiving numerous referrals from poverty programs . Transportation, Day-care and housing remain barriers to employing White Earth's 121 Project consumers.

Region Ten Quality Commission: Karen Larson introduced Cindy Ostrowski and John Jordan with the Region Ten Quality Assurance Commission. The training opened with the philosophy and background on the quality assurance process. The commission's web-site can be found at www.mn-voice.org. For an outline of the "VOICE Review Process" training provided, please refer to the commission's materials, which are attached.

Cindy and John fielded questions at the conclusion of their presentation.

The Olmstead Decision -- Five Years Later: William Bauer provided a summary of the Supreme Court's 1999 Olmstead case. In brief, this landmark decision held that the unjustifiable institutionalization of people with disabilities is discrimination. Nonetheless, five years later, the "nursing home bias" persists.

Too often, the wait for home-based services can take years; however, a person can enter a nursing home with no wait. One in five nursing home residents surveyed in 2004 indicated their desire to live in the community. This datum is based on a survey of approximately 1.4 million nursing home residents.

Few states have made the 1999 Olmstead decision a reality. As of February 2004, only twenty-nine states have Olmstead Plans, and few of these states have put these plans into action. Arguably, widespread state budget cuts have slowed progress -- budget deficits and spending cuts have resulted in the reduction of many states' home care budgets.

States vary in the proportion of dollars designated for home care and institutional care. According to data, Mississippi appears to be the worst in the union: eighty-seven percent of Mississippi's long-term care spending goes to institutions. In Texas, sixty-four percent of long-term care dollars go to institutions. It must be noted that Texas is one of the few states in which money can follow a person out of an institution. Minnesota does not appear to be doing much better. In 2003, approximately seventy-eight percent of Minnesota 's long-term care dollars went to institutions, with the remaining twenty-two percent going to home and community-based services, according to figures provided on DHS' web-site. Olmstead progress has been stalled in some states because revisions to Medicaid long-term funding systems are required. In most states, institutions and community programs are under separate budgets, which means these states continue to fund the same number of nursing home beds, and as a result, must find dollars elsewhere to add money for community-based services.

The Supreme Court in Olmstead did not suggest that institutional care be eliminated; rather, the decision called for a "range of choices" for people requiring care. Getting the "range of choices" word out to people in institutions can be difficult because many facility administrators and staff are not receptive to programs that would remove residents. According to the Supreme Court, the demands of the Olmstead decision cannot "fundamentally alter" a state's long-term care programs. The Department of Justice defines a "fundamental alteration" as, "A modification so significant that it alters the essential nature of the goods, services, facilities, privileges, advantages, or accommodations offered."

The first barrier encountered by people with disabilities wanting to relocate from institutions to community living is the inadequate number of affordable, accessible apartments and houses. A second barrier is personal assistance services. When wages are low, personal assistant turn-over is high.

Nationwide, disability rights advocates are going to the courts to enforce the Olmstead decision. In forty states, 130 lawsuits have been filed. Some of these plaintiffs are alleging that waiting lists for long-term community-based services violate Olmstead.

Lois Curtiss and Elaine Wilson were the two respondents in the Olmstead case. Ms. Curtiss will soon be starting work in a department store, and Ms. Wilson has been, since the Olmstead decision, a disability rights activist for community services.

Committee Reports: Sharon Johnson reported that the Advocacy and Education Committee completed all SPIL FFY 2002-2004 goals and objectives by the end of fiscal year 04. The committee members will continue to plan and implement diversity trainings for the council. The 2005 two-day out-state training will be held in East Grand forks and the 2006 two-day training in White Earth. Waivers will be the focus for the 2005 training meeting. The committee is also targeting training on Hmong and Russian cultures at some point during this SPIL. The committee also plans to complete SPIL goal two, objective G over the next three years. Fact sheet development will initially focus on Minnesota's disability data.

Karen Larson, Finance Committee chair, reported that all of her committee's goals and objectives were attained by the end of fiscal year 04. The committee is presently focusing on revising the action plan form to make it possible to continually identify which goals and objectives have been attained.

Lois Johnson, SPIL Committee chair, reported that her committee's goals and objectives were attained by the conclusion of fiscal year 04.

Visitor Comments: There were no visitors during this meeting.

Announcements, Issues, Correspondence: Phyllis Coppess announced that her PC is presently "inactive," and will remain thusly until further notice. Print copies of SILC materials shall be sent.

Barbara Chromy announced that she attended the mental health Conference at Maddens. She provided a summary of the various workshops she attended, which included a discussion on old verses new antidepressants and psychotropic medications; the bottom-line being the new drugs work much faster, but are not necessarily more effective, and are decidedly more expensive than the old medications. Discussion followed. Lois Johnson thanked Ms. Chromy for attending this conference on behalf of the SILC.

Karen Larson announced that ARC's state convention was held in Walker on October 8-9. There were discussions regarding the remaining RTCs unmarked grave sights. "Caring with Dignity" recently celebrated its tenth anniversary. Discussion followed.

Bradley Westerlund asked each SILC member to either phone or e-mail him to advise him who will be requiring accommodations for the December 15-16 Olmstead conference in the Twin Cities.

William Bauer asked the chair for two SILC members to participate in an October 20 OSERS presentation at the DEED offices. Barbara Chromy moved, Gloria Lafreniere seconded, that Ann Zick and Mark Eggen be sent as SILC representatives. There was no discussion, and the motion carried with Ann Zick and Mark Eggen abstaining.

Next Meeting, Adjournment: The next SILC meeting will be held on the evening of December 15, 2004 during the Olmstead Conference, at the Northland Inn, Brooklyn Park. The October meeting adjourned at 2:15 p.m.