Minutes for June 12/13, 2003

Meeting Location:  Radisson Hotel, St. Cloud

Present:  Lois Johnson, Mark Eggen, Ann Zick, Mary Pennington, Sharon Johnson, Bryan Jenson, Linda Lingen, William Bauer, Bradley Westerlund, Phyllis Coppess, RoseAnn Faber, Janiece Duffy.

Absent:  Karen Larson (excused), David Hancox, Cory Heit (excused), Clarence Jones.

Guests: Sheila Dodge, Barbara Kuhn, Mark McDonald, Ann Partridge, Cara Ruff, Kim Jahnke, Stacey Oconnel, Terri Holden, Karen Thielman, Marianne Burnett, Trude Adams, Gary Quinggle, Julie Linngren, Danelle St. Marie, Angie Cunningham.

Call to Order:  The Statewide Independent Living Council’s (SILC) June 12 out-state training was called to order at 9:00 a.m. by Lois Johnson, SILC chair. Introductions of council members and guests followed.

Consumer Survivor Network Training:  Sheila Dodge, CSN, provided a brief biography. She then began her training on CSN’s “Wellness Recovery Action Plan” or WRAP.

In summary, a WRAP is a structured plan for monitoring uncomfortable symptoms related to a person’s (eighteen years of age or older) mental illness, and then modifying, reducing or eliminating these symptoms. A WRAP, which is written solely by the consumer, includes individualized goals, wellness tools, daily maintenance plan, reminder list, action plan for “triggers” (if one recognizes them, one can do something about them), action plan for early warning signs, and a crisis plan.

A WRAP is a structured system for keeping oneself well and responding to issues. A WRAP is purely voluntary. Those attending WRAP classes can choose whether they want to even develop such a plan.

For more information on WRAP, phone toll-free (877) 210-2932. CSN’s e-mail address is: csnsc@uslink.net

VR for Transition-aged Youth:   Barbara Kuhn, an attorney with the Disability Law Center, discussed the Disability Law Center’s (DLC) mission, which is to be the protection and advocacy agency for Minnesotans with disabilities. There are no charges for services and no income restrictions. Ms. Kuhn presently works for the Disability Law Center’s client assistance program (CAP), which includes providing information concerning the “ticket to work” option (coming to MN in November 2003), work incentives, and legal barriers to employment.

Barbara Kuhn stated that both schools and public VR are responsible for providing transition services to youth with disabilities. She discussed the various disability-related laws, individualized education plans, and the importance of students’, parents’, teachers’ and VR counselors’ involvement in the development of transition plans. An individualized Plan for Employment (IPE) must be in place before the student graduates from high school. She discussed the client assistant program’s role should plans not be completed in a timely manner. Ms. Kuhn also discussed the appeals process should one’s application for VR services be denied. She explained the law defining impediments to employment, and Minnesota’s order of selection for services.

Ms. Kuhn discussed VR’s policies; at times, problems arise as to what’s the role of the school and what’s the role of VR, and who pays for what. Basically, IEP products/services are the school’s responsibility, while IPE products/services belong to VR. Some expenses are best shared by both the school and VR. She also discussed comparable benefits.

Ms. Kuhn summarized appeals, mediation, and informal reviews. There are differing statutes of limitations for the filing of appeals for RSB’s VR and SSB’s VR denials for services. She then discussed the CAP process. In most instances, a formal hearing is not required.

Ms. Kuhn also discussed the Ticket to Work, Work Incentives Improvement Act (TWWIIA). Tickets should be arriving in Minnesota in November of this year. Those wanting to know who is on the employment network may go to this web address: www.yourtickettowork.com

For DLC intakes, call toll-free (800) 292-4150. For employment and SSA, go to www.ssa.gov/work. The DLC’s web-site is at: www.mndlc.org

Visitors’ Comments:  A consumer asked the SILC how the February 2003 motion to give Centers Part B funds could be tabled when it requires action, why the SILC was discussing next year’s RFP process, and what the SILC was going to do to support the expansion of the statewide IL network. Lois Johnson replied that these matters will be discussed during Friday’s (June 13) business meeting, and that she could not offer any additional information prior to that date. Phyllis Coppess asked the guests to comment on the IL services they have received or are receiving. Several consumers provided highly positive comments about the assistance they were receiving from ILICIL. Another consumer stated that she had completed her internship at the Center, while another consumer commented that the Center was the most knowledgeable organization in the area about government programs. Many of the consumers present were involved in the letter-writing campaign, and/or attended the hearings at the capitol.

Lois Johnson thanked the guests for their comments.

ILICIL Transition Services:  Danelle St. Marie, ILICIL programs and services manager, provided the council with an overview of the Center’s services, which include “representative payee” services.

Transition services are offered to individuals who are between the ages of fourteen and twenty-two. These services are provided one-on-one or in groups as appropriate. There is a great deal of collaborating and networking required to deliver effective transition services. ILICIL’s transition services include money management, cooking and nutrition, interview skills training, interpersonal skills for employment, problem-solving skills, transportation/bus training, social skills, relationships, assertiveness, advocacy, realities of parenting, tax preparation, social activities, and citizenship. Ms. St. Marie also works closely with teachers; she attends IEP meetings; and Community Transition Interagency Councils. Several schools obtain grants to pay the fees associated with some of ILICIL’s transition services.

Questions and answers concluded Ms. St. Marie’s presentation.

Utilitarian Bioethics:  William Bauer, MDES IL director, began this presentation with a definition of terms. Utilitarian and utilitarianism focuses on utility, as opposed to aesthetics, and the happiness of society as a whole with no concern being placed on social, religious or moral values; in brief, to each according to what’s best for all. Bioethics is defined as the study of the ethical questions involved in the application of new biological and medical findings.

A summary of differing bioethical theories was provided, which include egalitarianism, libertarianism, communitarianism, and deontologism. A history of utilitarianism and utilitarian bioethics followed, which included a summary of the 1974 National Research Act and the subsequent 1978 Bellmont Report, which identified three medical principles to be utilized, under Federal law, in the use of human subjects for medical research. These so-called “Bellmont Principles” are the foundation for all bioethical theories, and are: Respect for Persons (utilitarian bioethicists have revised respect to mean” autonomy”); Justice; and beneficence.

Euthanasia, both voluntary and involuntary, assisted suicide, futile care doctrines, and the “painless” killing of the elderly and the disabled are the hallmarks of utilitarian bioethics. Since the late 1940’s, medical treatments have become so advanced that those who would have otherwise died are continuing to live and, according to utilitarian bioethicists, are draining our society of precious medical and financial resources.

Mr. Bauer briefly reviewed the career of one of today’s more visible utilitarian bioethicists -- Dr. Jack Kevorkian. Kevorkian began practicing euthanasia on those with terminal illnesses, but shifted his focus to assisted suicide for people with disabilities and, as a result, was convicted of homicide. Dr. Kevorkian remains an inmate at a Michigan penitentiary.

Peter Singer, a native of Australia, professor of ethics at Princeton University, and a leading utilitarian bioethicist was discussed next. Mr. Bauer quoted one source who described Peter Singer as, “one of the most fascinating philosophers of our time.” One of Singer’s critics, however, describes Singer as, “the most acclaimed, most disingenuous, sophomoric, tedious and in amicable individual alive to the civil order of the United States.” Singer’s beliefs, which Mr. Bauer defined as a philosophy of contempt, focus on the customary utilitarian approach to greater happiness through euthanasia, assisted suicide and the ”fallacy of the sanctity of human life.” Killing unhappy people, and all people with disabilities are unhappy according to Singer, is a net positive value. In addition, Singer is a proponent of involuntary assisted suicide and infanticide. According to Singer, those human beings incapable of rational thought and/or those who lack self-awareness are not people and are candidates for death – voluntary or involuntary. As a result, Singer believes it should be lawful for parents of newborn infants with disabilities to order their physicians to painlessly put these infants to death within thirty days of birth. According to Singer, the parents can then try for a non disabled child who will live a happy life, increase the happiness of the parents, and generally make the world a happier place. Quoting Singer, “The fact that a being is human is not relevant to the wrongness of killing it. It is rationality, autonomy, and self-consciousness that make a difference. Infants lack these characteristics. Killing them, therefore, cannot be equated with killing normal human beings or other self-conscious beings when the death of a disabled infant will lead to the birth of another infant with better prospects of a happy life. The total amount of happiness will be greater if the disabled child is killed.” In Singer’s world, animals have greater rights to life than do those people who are incapable of self-awareness.

Council members were reminded that Peter Singer teaches utilitarian bioethics to Princeton medical students. All medical schools require students to complete a course in bioethics prior to graduation. Mr. Bauer commented that bioethicists, unlike other professionals, have no code of ethics.

Peter Singer denies that his form of utilitarian bioethics is comparable to the euthanasia practiced in nazi Germany. Singer asserts that the Nazis were not motivated by a concern for the suffering of those who were killed. Mr. Bauer reported that Singer is a welcomed guest lecturer in every major nation but one – Germany.

Some utilitarian bioethicists support the development and maintenance of a national data bank with the names of those deemed less worthy; i.e., those with physical, sensory, mental or other disabilities. Those whose names are in this data bank would be euthanized to obtain organs for those deemed more worthy, but requiring organ transplants. The argument being there will be much more happiness if two lives can be saved from the killing of just one unhappy individual. Utilitarian bioethicists also support “futile care doctrines” which many hospitals now have in place. For example, twenty-four out of twenty-seven hospitals/medical facilities in California have such futile care doctrines. Futile care doctrines authorize a treating physician, with the approval of a committee of his/her colleagues, to withhold medical treatments that are viewed as “futile” by the treating physician and the committee -- irrespective of the wishes of the patient or his/her family members. Hospitals having “futile care doctrines” have carefully designed protocols in place; thus, litigation is usually futile since the courts tend to be willing and eager to defer to such well-defined, scrupulous processes.

Mr. Bauer briefly discussed health management organizations’ support of both futile care doctrines and utilitarian bioethics. When Oregon made physician-assisted suicide legal in 1997, several HMO’s in the state prepared memos ordering physicians providing services under these insurance plans to strictly honor patients’ wishes to die -- irrespective of any physician’s ethical, moral and religious values. It costs only forty dollars to assist someone to die in Oregon, and the physician writing the prescription for the deadly pharmaceutical need not be present when the patient self-administers the drug.

Mr. Bauer also discussed hospitals’ utilization of starvation for patients who are terminal, or have been ordered by the courts to be euthanized. Starvation is a legal form of euthanasia in all fifty states, and requires ten to fourteen days to be effective.

The presentation included a review of the opponents of utilitarian bioethics, who include “Not Dead Yet,” and Wesley J. Smith, attorney and author of, Culture of Death: The Assault on Medical Ethics in America (Encounter Books). SILC members were encouraged to read an article written by Harriet McPherson-Johnson titled, “unspeakable conversations” (New York Times Sunday Magazine). A copy of this article was e-mailed to all SILC members. A few critical comments from various essayists were also provided, such as, “This philosophy embodies the antihuman essence of fascism… One day, our great universities will be required to redeem themselves from the shame of having honored and promulgated ethicists who would excuse and facilitate the killing of the disabled, the weak, and the elderly.” And, “It (utilitarian bioethics) is the underlying philosophical basis for the plethora of moral dilemmas we are witnessing. We must attack the cause - not the symptoms. The cause, I propose, resides in our head in the form of a bankrupt philosophy of human nature.” And, “As with all made up theories, utilitarian bioethics does not work, and this is one of the best kept secrets of utilitarian bioethicists.”

Mr. Bauer closed his presentation by advising council members that Peter singer’s mother has Alzheimer’s disease and resides in a nursing institution.

SILC members toured ILICIL at four p.m. After which, the June 12 training session was adjourned.

Friday, June 13, 2003 Business Meeting

Meeting Location:  Radisson Hotel, St. Cloud

Present:  Lois Johnson, Mark Eggen, Janiece Duffy, Sharon Johnson, Ann Zick, Linda Lingen, RoseAnn Faber, Bryan Jensen, William Bauer, Bradley Westerlund, David Hancox, Phyllis Coppess.

Absent:  Karen Larson (excused), Cory Heit (excused), Mary Pennington (excused), Clarence Jones.

Guests: There were no guests attending the June 13 meeting.

Call to Order:  The June 13, 2003 meeting of the Statewide Independent Living Council (SILC) was called to order at 9:00 a.m. by Lois Johnson, SILC chair. Introductions followed.

Approval of May 15 Minutes and June 13 Agenda: William Bauer stated that he was contacted by Steve Thovson who requested the removal of a quote that was included during the May 15, 2003 legislative report. David Hancox commented that the quote, although documented properly in the May minutes, was hearsay. Sharon Johnson moved, David Hancox seconded, that the entire sentence in question be deleted from the May minutes. Discussion followed and the motion carried. David Hancox requested that the “et alia” be dropped from the May 15 minutes and the organizational name, “Ombudsman’s Office on Mental Health and Mental retardation” be added to the list. David Hancox so moved, RoseAnn Faber seconded. There was no discussion and the motion carried. David Hancox moved, RoseAnn Faber seconded, that the May 15 minutes be approved as revised. There was no discussion and the motion carried. Revised minutes will be submitted to all recipients.

Bryan Jensen requested that a discussion on the utilization of the 2004 Part B funds be added to the June 13 agenda. Lois Johnson approved the request.

Announcements, Issues, Correspondence:  David Hancox reported that Janet Lee, former SILC member, passed away in late May.

Sharon Johnson asked if the thank you letter to Connie Lee Berg had been mailed. She was advised that it will be mailed on June 16.

State Rehabilitation Council Report:  Lois Johnson reported that the SRC discussed impending cuts to several waiver programs. On July first, the Minnesota department of Economic Security will be merged with the Department of Trade and Economic Development, with the result being the MN Department of Employment and Economic Development.

Questions on this merger followed. It was reported that the new organizational chart is out. The Rehabilitation Services Branch and State Services for the Blind will remain separate, but under the leadership of Bonnie Elsey. Linda Lingen stated that SSB now has an acting director, who is Chuck Hamilton.

State Rehabilitation Council for the Blind Report: RoseAnn Faber reported on the activities of the June 5 SRCB meeting. The new committee list has been finalized, and will be distributed to recruit members. These new committees reflect what’s new in legislation. Two new members were named to the SRCB, and Governor Pawlenty will be designating three additional members.

Legislation passed permitting SRCB members to participate in meetings via the telephone. Members may participate in discussion and vote over the phone; however, it must be a roll call vote. Ms. Faber was uncertain whether this new law applies to the SRC and the SILC. Linda Lingen will discuss this question with Chuck Hamilton and get back to William Bauer. (Note: The legislation in question is attached at the end of these minutes. WB)

Legislative Report:  David Hancox announced that there was nothing new of impact or import to report. For state fiscal year 2005, state IL funds are supposed to be raised to $1.625 million.

Linda Lingen asked how funding cuts in other programs will affect Centers. Mr. Hancox replied that Centers can only anticipate how these cuts will impact the Centers. Cuts in waivers will most assuredly result in additional consumers turning to the Centers, and the ability to respond to these additional demands will be difficult – it will require creativity. Discussion followed.

Developmental Disabilities Council Report:  Ann Zick reported that the Council met on June fourth and discussed the collaborative activities planned for the Council, the Protection & Advocacy system, and the University Center for Excellence. Pam Hoopes from the MN Disability Law Center and Sherri Larson from the Institute for Community Integration presented their respective plans, priorities, and goals. Dave Dunn led council members in an exercise of collaborative brainstorming.

Anne Henry was given the majority of Council time to present a legislative update. (Please Note: A copy of MA, waiver and other DHS program cuts is attached. WB)

Awards were presented to the DD Council’s outgoing members although the DD Council is still waiting for new council appointments.

Committee Reports:  Sharon Johnson asked the chairperson to send action minutes in lieu of verbal committee reports. There were no objections. Sharon Johnson also requested that the minutes reflect a “thank-you” to Mary Pennington for researching and bringing some excellent materials to the education and advocacy committee.

2003 Monitorings and On-site Compliance Reviews:  William Bauer reported that a tentative schedule has been completed. ILICIL, SEMCIL, and CILNM will be undergoing on-site compliance reviews, while the remaining five Centers will receive monitorings. Lois Johnson was sent a copy of this year’s schedule.

IL Needs Survey:  William Bauer reported that Steve Scholl was injured in a biking accident in Ireland, and will be returning to work soon. The survey is nearing completion and the University’s report is expected in late July.

2003 SILC Appointments:  William Bauer reported that no word has been received to date from Governor Pawlenty’s office regarding the 2003 SILC appointments. Mr. Bauer commented that the appointments were not made until August during Governor Ventura’s first year in office.

Centers and FFY 2004 Part B Funds:  Discussion was begun with a review of the February motion to equally distribute all Part B funds to the eight Centers. It was again explained who has control of which portions of the B dollars. In summary, the SILC has authority over $125,000 annually and solely plans a three year budget in the SPIL for the use of these dollars; RSB-IL Section has authority over $115,000 annually, which goes to consumers requiring equipment or services; and SSB has authority over $57,000 annually of the Part B dollars which is utilized for services and equipment for people who are blind. In accordance with the Act, the SILC and the DSU (RSB, SSB) must work as partners in determining the use of Part B dollars, and this agreement is provided in detail in the SPIL. It was further explained that the SILC has autonomy over the $125, as does RSB and SSB with their Part B funds. No one entity can dictate how all Part B dollars will be utilized, and any amendment to the SPIL must be agreed upon by all three entities.

Phyllis Coppess stated that her understanding of the motion was that this proposed redistribution of Part B funds was made solely as a show of support to the legislature, or “purely symbolic.” Ms. Coppess added that the February meeting was emotionally-charged, but she did not appreciate the aggressive behavior of the Center directors present at that meeting. Sharon Johnson stated that it appears as if the Centers feel there has been a nefarious betrayal that has occurred since the February meeting, but that many on the council indeed believed that this was a purely symbolic gesture on the part of the SILC. Discussion followed.

Sharon Johnson moved that $60,000 of SILC Part b funds be distributed equally among the eight Centers to lessen the impact of lost State dollars; furthermore, this Part B allocation is to be a one time gift, and is not to be considered as a precedence-setting action. Lois Johnson called three times for a second. There was no second.

Discussion followed concerning whether the SILC could operate on less money during FFY 2004; i.e., were there some additional cost-cutting measures that could be taken; and whether some SILC members would be willing to assume some of their expenses for attending SILC meetings. Bryan Jensen moved that the final decision on the distribution of SILC Part B dollars to the Centers be tabled until the August meeting. Lois Johnson called three times for a second. There was no second. Additional discussions followed.

Mark Eggen moved that the SILC award whatever Part B SILC dollars remaining from the SILC’s 03 budget be distributed to the eight Centers. Sharon Johnson offered an amendment, to which Mr. Eggen agreed. Sharon Johnson moved, David Hancox seconded, that $56,000 of the FFY 2004 Part B SILC dollars be distributed equally to the eight Centers, and that this action was to be a one time gift with no precedence being set for giving Part B dollars to the Centers in future years. Discussion followed, and it was determined that this $56,000 would come from the grant award (RFP) line item, and that William Bauer would send an RFP for these ($56,000) dollars to the Centers. It was further agreed that this “RFP” for FFY 2004 would require a one page narrative on how the funds would be utilized to lessen the loss of State dollars, would require a budget, budget narrative and the requisite Federal forms. Discussion followed. Mark Eggen requested that paper ballots be utilized for this vote, and the SILC chair granted this request. With two individuals counting the ballots, the motion carried with David Hancox abstaining. William Bauer will submit an “RFP” letter and forms to the eight Centers, with the contracts for these Part B SILC funds to be effective from October 1, 2003 through September 30, 2004.

Next Meeting, Adjournment:  The next meeting of the SILC will be August 14, 2003 from 9:00 a.m. to 3:00 p.m. at the Four Points Midway Sheraton, St. Paul. The June 13 meeting adjourned at 12:10 p.m.

ATTACHMENTS.

Senate File 905.

336.26 Subd. 3. [ELECTRONIC OR TELEPHONIC MEETINGS.] (a)
336.27 Notwithstanding section 13D.01, the state rehabilitation council
336.28 and the statewide independent living council may conduct a
336.29 meeting of its members by telephone or other electronic means so
336.30 long as the following conditions are met:
336.31 (1) all members of the council participating in the
336.32 meeting, wherever their physical location, can hear one another
336.33 and can hear all discussion and testimony;
336.34 (2) members of the public present at the regular meeting
336.35 location of the council can hear all discussion and testimony
336.36 and all votes of members of the council;
337.1 (3) at least one member of the council is physically
337.2 present at the regular meeting location; and
337.3 (4) all votes are conducted by roll call, so each member's
337.4 vote on each issue can be identified and recorded.
337.5 (b) Each member of the council participating in a meeting
337.6 by telephone or other electronic means is considered present at
337.7 the meeting for purposes of determining a quorum and
337.8 participating in all proceedings.
337.9 (c) If telephone or other electronic means is used to
337.10 conduct a meeting, the council, to the extent practical, shall
337.11 allow a person to monitor the meeting electronically from a
337.12 remote location. The council may require the person making such
337.13 a connection to pay for documented marginal costs that the
337.14 council incurs as a result of the additional connection.
337.15 (d) If telephone or other electronic means is used to
337.16 conduct a regular, special, or emergency meeting, the council
337.17 shall provide notice of the regular meeting location, of the
337.18 fact that some members may participate by telephone or other
337.19 electronic means, and of the provisions of paragraph (c). The
337.20 timing and method of providing notice is governed by section
337.21 13D.04.
337.22 [EFFECTIVE DATE.] This section is effective the day
337.23 following final enactment.