Minnesota Statewide Independent Living Council"Creating the future of Independent Living through guidance and direction from people with disabilities"
Minnesota Statewide Independent Living CouncilMeeting Location: Radisson Hotel, St. Cloud
Present: Rand Stenhjem, Lois Johnson, Karen Larson, Connie Lee Berg, Janet Lee, Terry Graff, Rosemary Laberge, Joan Harris Stephan, Cory Heit, Martha Bergland, William Bauer, Bradley Westerlund, Carl Bryngelson, Kim Rezek, Judy Sanders.
Absent: Maureen Pranghofer, Laurie Weih, Steve Thovson, Susan Shogren Smith.
Guests: Cara Ruff, David Hancox, ASL interpreters Sandra Harrington, Paddy Hurle Shelden.
Call to Order: The April 9-10 out-state training meeting of the SILC was called to order at 9:00 a.m. by Lois Johnson, SILC Vice Chair. Introductions of members, guests and presenters followed.
Approval of February 18, 1999 Minutes: Janet moved, Karen seconded, that the February minutes be approved as written. The motion carried. It was noted that the February action minutes for the Education and Information Committee included Janet Lee as present, which was in error.
Training Introduction: Janet shared an anecdote regarding her driver, whom Janet has known for several years, and commented that some individuals quietly hold mistaken presumptions concerning people with disabilities. Janet stated that there were several revisions to the training agenda, due to her own lack of information regarding people with developmental disabilities, and those with mental disorders. As a result, the entire morning would be dedicated to training on these two disability groups. Housing training will begin after lunch, followed by Cara Ruff's presentation on IL-CIL. Janet then introduced Tina Copple, who is employed by Catholic Charities.
Tina shared a short poem and the names of famous individuals who have mental disorders. Tina stated that 17.6 million people have depression, while 3.3 million American adults have some other type of mental disorder. Approximately twenty-five percent of women and ten percent of men nationwide acquire some form of mental disorder annually. It is believed that everyone will have at least one depressive episode during his/her lifetime.
Tina stated that the needs of people with mental disorders vary greatly depending upon the type and severity of the mental disorder. Other factors, including the use of alcohol or other drugs, whether or not the person is undergoing psychological/psychiatric therapy, and where the person lives can also have an impact. Tina related her own experiences as a person whose learning disability was not diagnosed until after graduating from high school. She began working with people who have developmental disabilities; a job which she loves; and then entered college. Shortly thereafter, she was diagnosed as having severe depression with suicidal tendencies.
Tina reported that she was placed on anti depressants and noticed improvements within three weeks. She then approached Vocational Rehabilitation for assistance with her college training. Her VR counselor asked her to quit her job with Catholic Charities, which Tina was unwilling to do. She completed her college training on her own, and is now a licensed social worker. In response to a question, Tina stated that she generally can recognize, on her own, behaviors or symptoms which indicate that her medications are not at therapeutic levels.
Developmental Disabilities and Mental Disorders: Tina stated that a high percentage of people with Down's Syndrome develop Alzheimer’s's Disease late in life, and that all four of the individuals with whom she works have some other type of disability, in addition to having a Developmental Disability.
Tina discussed behaviors she's experienced while working with people with Developmental Disabilities and some form of mental disorder. She explained that a mental disorder is the result of a chemical imbalance in the brain, and that inappropriate behaviors are generally not by choice. She stated that it takes anti depressants or anti anxiety medications four to eight weeks to reach therapeutic levels, and require an additional four to eight weeks to become effective each time dosages are adjusted.
Tina discussed her own support system. She stated that she felt somewhat alienated in support groups, so she formed her own group whose participants include people with mental disorders who have similar backgrounds. In response to a question, Tina stated that one need for which the SILC could advocate is greater flexibility in services offered to elder people with developmental disabilities. In response to another question, Tina stated that the greatest obstacle confronting people with mental disorders is getting the services they need, without becoming "locked into the system."
Mental Health Initiatives Project: Janet introduced Linda Schulberg, who is an Operational Coordinator with the Willmar Regional Treatment Center (RTC). Linda also provided a brief list of famous individuals who have, or had, some type of mental disorder. She defined a mental disorder as, "a group of brain disorders which cause severe disturbances in thinking, feeling and relating to the rest of the world, which usually results in a substantial decrease in a person's ability to function and cope with basic day-to-day living." Factors contributing to mental disorders include heredity, stress, use of recreational drugs and family interactions. She provided statistics the same as, or similar to, those provided earlier by Tina. Linda stated that approximately two million Americans now have schizophrenia and three-hundred thousand new cases occur annually. The personal and social costs related to untreated mental disorders are staggering. The cost for treatment annually is $55.4 billion, while the indirect costs (loss of employment, lack of productivity, criminal activity, vehicular accidents) is more than $273 billion annually.
Linda stated that the three major mental disorders are schizophrenia, major depression, and bipolar disorder. She reported that the Mental Health Initiatives Project was designed to provide an altered system of services for adults with serious or persistent mental illness (SPMI). She explained that schizophrenia impairs a person's ability to think and communicate in an organized, logical, clear and, at times, realistic manner. There are different types of schizophrenia. There are three criteria required to be diagnosed with schizophrenia: An individual must be psychotic for at least six months, must exhibit a deteriorating level of functioning, and there must be no other organic cause for this person's symptoms. She further explained that there are three types of psychotic symptoms, which are hallucinations (hearing voices that others do not hear is the most common form of hallucination), delusions (false beliefs that are very real to people experiencing delusions), and disorganized speech (jumping from subject to subject, non sequiturs). People with schizophrenia have difficulties concentrating, may not be able to organize their thoughts, are easily distracted, have an absence of normal feelings, spend extensive amounts of energy attempting to cope with anxiety, have no motivation, withdraw socially, and may ignore their hygiene and personal appearance. About one-third of people with schizophrenia can improve and function at a high level without medication, another one-third function less well and require medication and assistance in coping with day-to-day living, and the final one-third are significantly impaired even with medication and require frequent hospitalization.
Linda discussed depression, which ranges from mild to severe. She noted that the suicide rate among people with depression is approximately twelve times higher than that of the general population. Symptoms of depression include poor concentration, loss of memory, sleeplessness, difficulty making decisions, loss of self-esteem, inability to feel pleasure, loss of sex drive, social withdrawal, apathy, loss of appetite, and fatigue. Linda described depression in the words of one individual who had this disability as follows:
"Being chronically depressed is like being trapped in a bare, white room -- a seamless monotony from which there is no escape. In fact, it is this which is the essence of depression: The despair of absolute nothingness; of being trapped in an complete void. Nothingness. That is depression. No color, no light, no substance, no reality, no fantasy; just the paralyzing sense of despair in knowing that nothing, absolutely nothing can be done to change it."
Linda stated that people with severe depression can become psychotic with delusions and hallucinations, but these symptoms generally disappear as the person's depression lifts.
Linda next discussed bipolar disorder, which was formerly known as manic-depression. People with bipolar disorder experience cycles of mania and depression. When depressed, it is a severe depression. While in the manic phase, a person's mood can become so elevated that he/she behaves inappropriately, speech may become rapid and pressured, thoughts race from one idea to the next, he/she experiences a great deal of energy and requires little sleep, eating patterns may change, is easily distracted, and thinking patterns may become as distorted as those of someone with schizophrenia. In the manic phase, the person may also become grandiose with great schemes, and/or engage in activities that are inappropriate; e.g., spending sprees.
Linda stated that people with mental disorders can become contributing members of their communities, due to new treatments. Linda indicated that there is no cure for mental disorders, but treatment can be highly effective. These treatments include hospitalization, medication, electro convulsive therapy, and psycho-social rehabilitation. The treatment delivery system for people with SPMI has long been based on problems and needs with the treatment course and the after-care design being controlled by professionals (psychiatrists, psychologists, social workers). The person with the mental disorder had little to say about his/her treatment and what he/she wanted to do. Hospitalization, that could last for years, was almost always a part of the treatment course. Linda stated that chronic mental disorders generally have two components : The "out-of-control" phase and the "long-term" phase.
In 1995, the State of Minnesota challenged the counties to develop multi-county pilot projects to implement systemic change in the delivery of community-based mental health services for adults with SPMI. The expected outcome of this pilot project was to provide and expand an integrated array of services from which consumers could choose services appropriate to their needs; to improve access and coordination of services without the boundaries imposed by counties; to utilize staff in the RTC's and community-based partnerships; to create a range of housing options, community supports, and wrap-around services utilizing public and private partnerships; and to decrease the need for hospitalizations for consumers without reducing consumers' quality of life or functioning levels that consumers had achieved. As a result, fifteen mental health initiatives were developed involving all eighty-seven counties in Minnesota. Each of these initiatives is hubbed around an RTC. These initiatives include the development of mobile service teams, enhanced crisis services, community support services, and streamlined case management.
Linda discussed her RTC's initiative, dubbed the "Strength through the Community Project." According to Linda, this project emphasizes unity; the involvement of consumers and their family members was viewed as an integral part of this project. Focus groups were conducted, a consumer advisory council developed, and a broad-based consumer survey was conducted, which revealed four themes: People with SPMI had a desire for employment; there was an importance attached to family and friends as support; a wish to utilize community leisure services; and the overall concern of maintaining mental health. Linda added that educating the community on mental disorders was also identified as an important need by many of those surveyed. The philosophy of the project was to alter the service system to become ability-based, as opposed to needs-based; that is, looking at consumers' abilities and natural supports instead of fitting consumers into an established system of services.
Linda stated that the project has five goals, which are to reduce the utilization of the Regional Treatment Centers; to increase vocational opportunities; to use an individual wrap-around planning process; to maintain housing and medication opportunities; and to regionalize services and administrative functions. This project can offer eligible consumers new options in assisting them with their recovery. The project's services include a community access team, crisis intervention, flexible funding, vocational services (the "Work Involvement Now" and "Minnesota Works" programs), medication assistance program, housing assistance, wrap-around services (consumer-control of lifelong goals, recovery, and required support services), and consumer/family/employer disability-awareness.
Linda fielded questions concerning "legal insanity," the definition of SPMI and the three major mental disorders, heredity/genetics and mental disorders, and the mis-diagnosis of mental disorders.
A Consumer's Perspectives on Depression and Chemical Dependencies: Connie Lee Berg provided Council members her thoughts and experiences regarding depression and the recovery process. Connie emphasized the importance of understanding the broad spectrum of mental disorders. She stated that small communities can be the greatest providers of support for someone with a mental disorder -- irrespective of the stigmas most people continue to attach to any type of mental disability.
Connie stated that depression is more than merely feeling sad; rather, it is a serious mood disorder that requires treatment. Without treatment, depression can last for months, years or an entire lifetime. She reported even with treatment, fifteen percent of people with depression take their own lives. She described depression as a continual downward spiral. She stated that when her home becomes a safe place, a place for confinement, she knows that she has a problem. Women are more susceptible to depression than men, and people having relatives who have depression are two to three times more likely to become depressed. She reported that over fifteen million Americans have depression and, in her opinion, people with severe depression are often unable to get the initial help they need. In these cases, support and encouragement from family and friends are necessary. She said that there is a great need for education and awareness regarding depression. Alcoholism and drug abuse may be the result of untreated mental disorders. She reiterated that the three major types of SPMI are depression, schizophrenia and bipolar disorder; all of which have varying degrees of severity.
Connie next discussed SPMI and cultural considerations. She said that there is a lack of information regarding SPMI among American Indian People. Helping others, however, is key to American Indian philosophy. She added that becoming active in your community, if you have a SPMI, is extremely helpful to your recovery.
Connie advised that maintaining scrupulous notes and records can be helpful in getting the best treatment for depression, and one should share these notes with a family member or friend. Such notes or journals may also assist one's physician, psychologist or psychiatrist. She added that one should not be afraid to seek a second opinion regarding the diagnosis or treatment. She stated that the earlier one begins treatment, the easier it is to work toward recovery. Thoughts of suicide or death are often part of depression. She said that stress, the death of a friend or family member, or a medical condition may trigger depression.
Connie said that severe depression may prevent you from being able to do daily activities. Moderate depression may hinder doing the things you need to do. Acute treatments work on the depressive illness until you feel better, while continuation treatments keep you from backsliding.
One's symptoms, medical and family histories are important in determining the exact type and amount of medication you are prescribed. Keeping appointments with one's psychologist and/or psychiatrist is important. Being aware of, and watchful for, an antidepressant's side-effects is also critical during treatment. One should never change his/her own medication, nor discontinue taking the prescribed medication. She reported that some people have taken antidepressants for more than thirty years without negative effects. Long-term psycho therapy is generally not advised, but maintenance therapy may delay or prevent a recurrence.
When depressed, Connie advised that one should set a realistic schedule , and attempt to avoid making major life decisions while depressed. One should also entirely avoid drugs and alcohol while taking antidepressants. She advised that it takes time for depression to set in, and will take time to recover from depression. She stated that research indicates that depression is not inherited.
Connie briefly discussed chemical dependency. Failing to recognize a chemical dependency in oneself is common, as is denial; even though there is a great deal of support available for treating chemical dependencies. The effect of a parent's chemical dependency on his/her children may not surface for years. Connie stated that her own chemical dependency issues were addressed on an outpatient basis. She stated that she was never officially diagnosed as having a chemical dependency, but knew that her behavior warranted treatment. She said her single parent status motivated her to seek treatment. She views her decision to quit drinking as lifesaving. She stated that she had relapses during her first year of being "on the wagon." She said one must learn how not to drink, and to never forget the problems drinking has caused.
Housing Training: Diane Sprague, State Housing Finance Agency, provided an overview of conventional and subsidized housing programs, and what is behind the housing shortage. She stated that both public and private funds are utilized for housing projects. These projects have many players such as HUD, and Rural Housing Services at the federal level, in addition to the various State agencies such as the Housing Finance Agency, the Department of Trade and Economic Development, and the Department of Children, Families and Learning, as well as local investors such as the Housing and Redevelopment Authorities, community action programs, and a range of not-for-profit organizations.
Diane stated that public and subsidized housing are very different programs. She reported that public housing projects started during the depression years of the thirties, and that such projects generally consist of both public and private dollars; in these cases, the public housing owner agrees to provide lower rent to low-income residents. She reported that these public housing programs began "devolving" in the seventies, with the Federal role being turned over to the state or the private sector. The push toward privatization and the leveraging of public funds continued, which resulted in the establishment of the State Housing Finance Agency. Diane said that state funds presently account for only eight percent of the agency's budget. She said state dollars are used primarily to raise other funds; e.g., investing in the stock and bonds markets. The profits are then utilized for housing loans. Diane noted that there are all types of entitlement programs, but no such entitlements exist for acquiring safe, decent, and affordable housing for individuals with low incomes.
Banks are regulated as to how much they can loan for public housing projects; nonetheless, Diane said it's easier to get loans than to acquire discretionary funds (funds the agency has raised). She then discussed public housing income, operating expenses, debt, and the various strategies utilized to ensure that housing projects at least break even.
Diane said that there has been a significant cut in Federal housing funds since the eighties. There were even attempts to eliminate HUD. Benefits to housing investors have also been reduced or lost. She stated that inflation has raised the per unit construction costs from $20,000 to somewhere between $70,000 to $100,000 which results in rents too high for low or even moderate income people. She stated that some private foundations have made efforts to fill some of these gaps. She also noted that some private investors who received Federal funds in exchange for the promise to provide decreased rents to low- income people are now paying off their mortgages and moving away from low-income tenants. In addition, many of these private owners are opting out of the public housing market by paying off their mortgages early.
Diane stated that the voucher approach to affordable, decent housing is also in trouble. These resources, as with HUD dollars, have been significantly reduced over the years which has only worsened the already large Section 8 waiting lists. She said that Section 8 contracts with owners are frequently now only from year to year, as opposed to the past practice of multi year contracts.
The housing shortage is worsened by the extensive number of service industry jobs; most of which pay entry-level wages. The housing shortage in general has become sufficiently chronic for some employers to offer rent and/or down-payment assistance to their employees. Diane reported that Minnesota's public and subsidized housing projects have a less than one percent vacancy rate, and long waiting lists.
There were efforts in the seventies and eighties to have all units in housing projects wheelchair accessible. No one, however, was monitoring these accessible units to determine to whom they were being rented. In some units, accessibility features were removed. The Fair Housing Act introduced the notion of "adaptability," which designates the number of units that must be accessible, while the remaining units can be adapted for accessibility.
For more information on housing, go to the Housing Finance Agency's web at: mhfa@state.mn.us
IL-CIL Training: Cara Ruff, Executive Director of Independent Lifestyles, Incorporated-A Center for Independent Living, began her presentation with a brief legislative update. On the date of this meeting, both houses had bills for an increase to the CIL funding base. The house side, however, had issues regarding how funds were being distributed. David Hancox added that the republicans made it clear that they wanted no new, large funding bills. MACIL had requested a $2.5 million increase, which was the additional amount CIL Executive Directors felt was needed to serve the eight Centers current service areas. On March 24, one Center Executive Director and some Center consumers testified before the house committee. David stated that all of those testifying provided highly positive comments regarding CIL services. Testimony was provided before the senate committee on April 6. It was anticipated that the funding bill would be out of the house committee on April 9. Dave added that Mick provided committee members positive comments regarding, and his support of, CIL services.
Rand asked Cara how the Centers felt the new lobbyists were doing during this legislative session. Cara said the consensus appears to be that the Centers are comfortable with the work that the new lobbyists are doing.
Cara introduced two IL-CIL staff members - Danelle St. Marie and Amy Greenwaldt. Cara reported that the Transition program has had an extraordinary year; Danelle obtained contracts with many of the schools in the IL-CIL service area. Through group trainings, the Center provided Transition services to 809 students last year. Cara reported that the Center has moved to group trainings wherever feasible; as a result, 497 consumers received IL skills training, and thirty individuals received peer services. One of the Center's new programs is called "PROFIT," or Proudly Reaching Opportunities for Financial Independence Together, which provides skills training in employment and financial management. Cara stated that she feels that this program could be duplicated in the other Centers. At the conclusion of PROFIT training, some of the participants become facilitators for future trainings. Amy coordinates this new program.
Cara reported that the search for alternative funding sources has been ongoing since IL-CIL's inception. Securing these new resources has permitted IL-CIL to initiate the "STAIR Program" (Self-sufficiency Training Arriving at Independence and Recovery) for people with SPMI or TBI. This new program focuses on socialization and community integration skills training, and also utilizes peer leaders. She stated that IL-CIL was awarded a Department of Human Services grant for mental health screening of homeless youths . Cara reported that frequently these individuals are the children of people with disabilities.
SILC Resignations: Rand reported that Scott and Dale recently resigned from the SILC; Scott due to a new job in Wisconsin, and Dale as the result of time and work conflicts. Rand appointed Cory as Chair of the Finance Committee. A new chair will be appointed to the Advocacy and Collaboration Committee with Dale's departure.
Call to Order: Rand called the April 10 business meeting of the SILC to order at 9:00 a.m. the video, "The Helen L. Story" was played.
Agenda Revisions: Nominations and election of a new Treasurer was added to the agenda. By-law revisions, SPIL time-lines, MCIL outreach video, and attendance were also added. Region V SILC representative, Part C increase, and legislative update were removed from the April 10 agenda.
Outreach Video: David Hancox played an ADA training/Hmong community outreach tape for Council members. David stated that St. Paul's urban Hmong community is the largest outside of Southeast Asia. The production of this video was made possible by a grant from the University of Chicago UAP.
Treasurer Nominations and Election: Rand called for nominations for Treasurer. Lois nominated Cory, and Terry seconded. No additional nominations were made. Joan moved, Rosemary seconded, that nominations for Treasurer be closed. The motion carried. Cory abstained from voting, and was elected to the position.
By-law Revisions: Karen requested that several revisions be made to the current by-laws; specifically, Sections 4.1 and 4.5. Discussion followed. Copies of these revisions are included in this packet, and Council members will vote on these revisions at the June 10 meeting.
704 Report for FFY 1998: Bill announced the aggregated 704 Part I report for FFY 1998 was mailed prior to the deadline. He stated that statewide IL programs and services data for FFY 1998 were impressive and thanked the Centers, SSB and RSB Counselors for their outstanding work. Connie thanked Bill for a report that was well-written and professional.
NCIL Membership: Rand reported that it was decided at the January SILC Congress that the national SILC organization would be housed at NCIL. SILC's nationwide, therefore, have to become NCIL members to be part of the national SILC organization. Rand added that SILC national will not be a NCIL standing committee. Minnesota is one of the few Councils nationwide that is not currently a NCIL member. Discussion followed regarding the pros and cons of NCIL membership. Lois moved, Karen seconded, that the SILC join NCIL for one year. Discussion followed. The motion carried with Connie and Terry abstaining.
SILC Representative to the NCIL National Conference: Cory moved, Terry seconded, that the Council send one member to the NCIL National Conference, which will be conducted June 22-28 in Washington, D.C. Rand asked for volunteers. Bill reported that this year's conference has housing issues meetings scheduled for the twenty-second, twenty-seventh and twenty-eighth for SILC Chairs, Center Executive Directors and DSU representatives. Judy stated that the SILC Chair should attend this conference. Lois, Karen, Joan and Marty expressed interest in attending the NCIL Conference. Cory revised the motion to send one member to the NCIL Conference prioritizing Rand, Lois, Karen, Joan and Marty, in that order. Terry Seconded and the motion carried with all candidates for the conference abstaining.
SPIL Update: Lois reviewed all committee work to date, and prepared a report indicating who needs to be doing what. (This report is enclosed.)
Committee Reports: Lois, SPIL Committee Chair, reported that public hearings will be conducted in September at IL-CIL, Options, SWCIL, and Freedom CIL between September seventh and eleventh. Connie will be SILC representative at Options, Terry at St. Cloud, Lois for SWCIL, and Cory for Freedom.
In Janet's absence, Joan reported for the Education Committee. She stated that work was progressing on training, and an attachment will be included in the next SILC mailing. Joan asked for comments regarding the April ninth training. Karen said she felt it would have been more informative had DD not been combined with SPMI. Cory stated that he felt the Education Committee had done a fine job. Karen felt that paper evaluations should be provided following these trainings. Lois stated that she would like additional information on SSA changes for this autumn's training. Joan said that she would prepare an evaluation form for the next mailing. Marty commented on the lack of using "people language" by some of the trainers.
Rand asked Joan about the new manuals. Joan stated that she expected this task to be completed before the end of April.
Cory reported for the Finance Committee. Cory stated that a request for $2030 was received from SMILES to continue the Senior Companion Project, which the committee approved for a vote by the full Council. Cory added that this grant would be for one year only, and that continuation funding for Senior Companion Projects statewide should not be sought from the SILC. Lois moved that the Council approve a Senior Companion grant of $2030 to SMILES, with the stipulation that SILC funds will not be available for this project next year. Connie seconded, and the motion carried with Marty abstaining.
Cory reported that the RFP process has been formalized by the Finance Committee. (RFP materials are enclosed.) Cory stated that for FFY 2000 the committee will be seeking innovative projects with focus areas following the SPIL.
Attendance: Connie commented that some members have missed several meetings. Connie stated that she was concerned about these chronically absent members because of the aggressive SPIL the Council has. Rand replied that he still has been unable to reach anyone with the Governor's office. Discussion followed. Bill will bring SILC applications to the next meeting.
Old Business: Rand reported that he had not yet sent a letter to the Governor thanking him for withdrawing Minnesota's support of the National Governors Association's amicus curiae brief. Lois moved, Cory seconded, that a similar letter of thanks be sent to Attorney General Mike Hatch. The motion carried.
Issues: Rand commented on the NCD's work with the Air Carriers Access Act. In addition, the Olmstead case was briefly discussed, as was the Workforce Investment Act (WIA).
Karen discussed "Remembering with Dignity," which is attempting to have proper markers placed on the graves of people who were institutionalized at the Faribault RTC. It was mentioned that "Remembering with Dignity" has become a national movement, which started in Pennsylvania.
For many years, people who passed away in institutions were buried with only numbers marking their graves. Karen stated that at one cemetery, they were buried without even numbers. Karen reported that there will be a fund-raiser on April 22, 7:00 p.m. at the Minnesota History Center, St. Paul. Call ACT for tickets.
Announcements: Joan announced that there will be a movie concerning deafness titled "Blue Moon" coming on CBS.
Next Meeting: The next meeting will be held on June 10, from 9:00 a.m. to 3:00 p.m. at the Midway Sheraton, St. Paul.
Adjournment: The April 10 meeting adjourned at 12:40 p.m.
For more information on MN SILC, contact Brad Westerlund.
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