Minutes for June 14-15, 2001

Meeting Locations: Red Lake Nation, Holiday Inn Express, Bemidji.

Present:  Connie Lee Berg, Lois Johnson, Roseann Faber, Mary Pennington, Sharon Johnson, Kim Rezek, William Bauer, Bradley Westerlund, Linda Lingen, Bryan Jensen, Hulet Sherry, Phyllis Coppess, Ann Zick. 

Absent:  Joe Ascheman, Terry Graff (excused), Karen Larson (excused), Janiece Duffy, Rosemary Laberge (excused), Rick Cardenas (excused), Rand Stenhjem (excused), Cory Heit (excused), Cara Ruff (excused).

Presenters and Guests:  Bobby Whitefeather, Jason Siddens, Al Thunder, Mike Ness, Laurie Berner, Marlene Stenlund, Candace Robertson, ASL Interpreters Amanda Starzl and Amy Brands.

June 14 Training

The training portion of the SILC’s outstate meeting began in Red Lake with a tour of the Whitefeather and Moe Training, Education and Technology Center.  Jason Siddens served as guide through the facility, which is the home to numerous technical training programs and services.  The “New Beginnings” program offers college accredited (Northwest Technical) courses in electricity, forestry, clerical, LPN, mechanics, and construction.  “New Beginnings” focuses on returning people to the workforce, with a number of the students being “Welfare to Work” clients.  Mr. Siddens fielded numerous questions from the Council throughout the tour. 

The training then moved to the Red Lake Tribal Council headquarters.  Al Thunder, Tribal Council Coordinator, provided the welcoming address, a history of the Red Lake People, and an overview of the Tribal Council.  The Red Lake Nation has its own hospital, transit system, police force, tribal court, nursing home, schools, and flag.  Mr. Thunder explained the meanings behind the figures and symbols on Red Lake’s flag.  Mr. Thunder stated that the Red Lake Tribal Council is discussing the initiation of a tribal college.  A homeless shelter is presently under construction. 

Chairman Whitefeather entered, and introductions followed.  The Chairman greeted SILC members in Ojibway and thanked everyone for coming.  Chairman Whitefeather discussed joint disability issues, and the Red Lake Council’s determination to take an active role in finding resolutions.  The Chairman acknowledged Connie’s disability-related work and leadership. 

Sharon Johnson provided training on Serious and Persistent Mental Illness (SPMI).  Sharon provided the definition of SPMI, as prepared by the State Legislature in 1993, as well as the clinical definition.  She discussed the closure of the state hospitals and moving people with SPMI into smaller facilities.  The result was the same; i.e., an over dependence on day treatment.  Sharon next discussed public opinions surrounding people with SPMI, which result in social isolation.  Sharon reported that homelessness is increasingly a problem, and that homeless people with SPMI are often the victims of sexual predators or other criminals.  Independence and life away from the institutions must have regulations and dedicated, enlightened people working in the group homes.  Sharon also discussed new medications, and the results of people with SPMI failing to take, or going off of these treatments.  She also discussed IL with supports – works well for some individuals, while others simply cannot handle it.  SPMI is cyclical in nature, and there is decidedly a value and impact of work for people with SPMI.  Boredom is one of the major contributing factors to depression.  SPMI also carries a limited tolerance of stress.  Sharon shared new statistics from “Status and Evaluation of the Employment and Support Services of People with Mental Illness,” which is available on line at www.mnworkforcecenter.org.

Mike Ness, Director of Red Lake Transit Program, was the SILC’s next speaker.  The first Federal grant was awarded in, and the program was up and running by the end of that year.  The program presently has one bus and a SUV.  Mike stated that the program’s goal is to never turn down a request for a ride, but it is frequently a challenge to meet all requests, and Mike is considering taking charge of the casino’s bus service and adding these vehicles to the program.  Mike explained that this is a public bus system, so rides are available to everyone, and not just Red Lake residents.  With the lake, it’s approximately sixty miles from one side of Red Lake to the other.  The Tribal Council provides fifty percent of the program’s operating costs, and the Federal government provides eighty percent of the capital costs.  Fares are kept as low as possible.  The bus accommodates twenty riders, with two wheelchair tie-downs.  The program’s grant must be renewed annually.

Laurie Berner discussed epilepsy.  Laurie began by explaining what epilepsy and seizures are.  Presently, about 2.5 million people in the U.S. have ben diagnosed with epilepsy.  Fetal problems, genetics, meningitis, brain injury, tumor, and stroke can result in epilepsy.  Laurie stated that approximately seventy percent of the time it’s unknown why someone has epilepsy.  Laurie next explained the classifications of seizures, which are generalized, partial, and simple partial.  People can have more than one type of seizure, and women with epilepsy have different issues than men with epilepsy; e.g., seizure medications can render birth control pills ineffective, impact menstrual cycles, and cause birth defects.  Laurie reported that people under the age of ten and over the age of fifty-five are the fastest growing groups of individuals with epilepsy.  Laurie next discussed what to do when in the company of someone who is having a seizure.  Loosen ties, buttons, but do not attempt to hold the person down, nor try to hold down his/her tongue.  Remove eyeglasses, and attempt to place some type of cushion beneath the person’s head.  Watch the person closely after the seizure ends.  Sleep and/or confusion frequently follows a seizure.  Stay calm, and try to remember to time the seizure.  Laurie discussed seizure triggers, which include not taking one’s medication, lack of sleep, fever, alcohol, poor nutrition, stress, menstruation, and flickering lights.  Laurie stated that there have been numerous new medications for treating seizure disorders, but the challenge is cost.  Surgery is becoming increasingly popular.  Nerve stimulation is also being attempted.  High fat diets have worked for some children.  Laurie stated that successful treatment of epilepsy demands that one have a positive working relationship with his/her neurologist.  Laurie discussed preventative measures such as wearing seat belts and helmets.  A first aid video was shown. 

Marlene Stenlund next discussed fibromyalgia.  Marlene stated that she’s an RN and bio-feedback therapist.  She discussed the assistance one can receive from the Arthritis Foundation.  She discussed using one’s own relaxation response to help heal the body.  She reported that approximately thirty percent of people with fibromyalgia are disabled by this syndrome.  It is unknown what fibromyalgia’s cause is.  She briefly discussed some of the symptoms, and flare-ups are common.  Loss of sleep, neck and shoulder problems are also common with fibromyalgia.  Eighty percent of people with fibromyalgia are female. Anti depressants, prescribed in low dosages, are frequently used to treat this syndrome.  The presence of unexplained pain in wide areas of the body, sensitivity amplification and non restorative sleep for a period of three months are diagnostics of fibromyalgia.  Some consider people with fibromyalgia to be society’s “canaries” reflecting the poisoning of our environment.  Chronic fatigue and fibromyalgia are considered by some physicians to be the same syndrome.  There is primary and secondary fibromyalgia, with the secondary type resulting from an illness or accident.  Secondary fibromyalgia is generally more serious.  Changing one’s lifestyle appears to be the best treatment, and learning to manage stress is key. 

A tour of Red Lake was provided to Council members by the Red Lake Transit Program. 

June 15 Business Meeting

Call to Order:  The June 15 meeting of the SILC was called to order at 9:00 a.m. by Connie Lee Berg, SILC Chair.  Welcome and introductions followed.  In attendance were Brian Jensen, Mary Pennington, Roseann Faber, Hulet Sherry, Sharon Johnson, Phyllis Coppess, Linda Lingen, Kim Rezek, Bill Bauer and Brad Westerlund.

Approval of May Minutes and June Agenda:  With the absence of Cara and Lois, the SRC and MACIL reports were struck from the agenda.  There were no additional revisions, and the agenda was approved as revised.  The May minutes had one revision under the SRCB report, and the minutes were approved as revised.   

Nominations and Election of Officers:  Tabled until the August meeting. 

Task Force Appointments:  Connie appointed Rand as Chair.  Brian, Sharon, Lois, Bill and Connie will serve on the MDES restructuring task force.  The first meeting is tentatively scheduled for the evening of August 8, at the Midway Sheraton from 6:00 p.m. to 8:00 p.m.  Bill will contact Barbara Yates to speak to the Council during the August 9 SILC meeting. 

SRCB Update:  Roseann reported that the council met on June 14.  Connie, Linda and Roseann participated via telephone.  There was a report on the continuous improvement document, as well as a series of committee reports.  SSB has been successful in getting all of the match for the “Twenty-first Century Project.”  One committee’s assignment was to review other departments for the MDES restructuring.  The Departments of Administration, Children, Families and Learning, and Labor are still under consideration.  It was determined that additional information was required before considering the Department of Human Services.  There was a motion to develop a committee to explore whether a free-standing unit would work for SSB.  The next meeting of the State Rehabilitation Council for the Blind is August 2. 

Connie commented on SSB’s two unclassified outreach positions.  There was also a discussion on marketing “The Store’s” merchandise.  Connie will prepare a letter of support from the SILC for maintaining “The Store” and its essential merchandise. 

Signing of FFY 2002-2004 SPIL:  Sharon praised the efforts taken in preparing the new SPIL.  Connie commented that she contacted Thomas Finch in the matter of failing to include 121 Project participation on the pre prints.  Connie stated that she felt the SPIL was well written, and Sharon added that it was learning experience.  There were no additional comments on the FFY 2002-2004 SPIL.  Sharon moved, Roseann seconded, that the SILC approve and sign the FFY 2002-2004 SPIL.  There was no further discussion, and the motion carried.   Connie signed the document. 

Future Outstate Meetings:  Ann suggested that scholarships be offered for consumers to participate in future outstate meetings.  Bill suggested that SEMCIL’s new office be considered for the next outstate meeting.  He commented on how impressive SEMCIL’s new building is, and highly recommended that SILC members stop in any time they are in Rochester. 

The next regular SILC meeting will include reports from the Centers.

Correspondence, Issues, Announcements:  Brian asked the SILC to sponsor his trip to the International Conference of Parents with Disabilities, which will be October 11-14 in San Francisco.  He specifically requested the SILC to pay air fare, meals and hotel accommodations.  Connie asked Brian to get an estimate on these costs.  This request was tabled until the August meeting.  Brad will check the state’s travel agency for airfare costs.  Ann also suggested that Brian contact the organization’s state Chapter, and request assistance for the conference. 

Bill reported that, to date, three Centers had undergone on-site monitorings.  Written reports will follow. 

Connie announced that yesterday’s training in Red Lake was “a highlight” in her career.  She added that it was not often that Chairman Whitefeather drops by to address a group.  Sharon and Ann will send a thank you note to the Chairman on behalf of the SILC. 

Next Meeting, Adjournment:   The next regular meeting will be August 9, form 9:00 a.m. to 3:00 p.m. at the Midway Sheraton, St. Paul.  The meeting adjourned at 10:00 a.m.