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Executive Staff Committee

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Executive Staff Committee

    Meeting Minutes

    Parent Advisory Council

    May 20, 2006

    Commission for Children with Special Health Care Needs

    Galt House Hotel, Louisville, Ky

    1:00p.m. 3:30p.m.

    COUNCIL MEMBERSHIP

    Chair/Co-Chair Not applicable on this date

    Beth Atherton Kantor King

    Council Members Katina Banks Amy Kirby

    John Bell Toni Moore

    Rhonda Bowlin Valerie Morton

    Mona Bush Missy Phillips

    Amanda Comstock Jay Rasmussen

    Betty Cureington Tara Sadler

    Sandra Davis Christi Scovel

    April Dyer Judy Settle

    Larry Gayden Anne Weaver

    Kim Heller Karen White

    Phillip Hobbs

    Eric Friedlander, Executive Director CCSHCN Anne Swinford, Director of Quality and Outcomes

    Lee Gordon, Transitions Administrator

    Debbie Gilbert, Family Voices

    Linda Miller, Program Coordinator

    Sondra Gilbert, Parent Consultant

    Tisha Ziemer, Parent Consultant

    2006 COMMITTEE CALENDAR

    DATE TIME LOCATION

    July 15, 2006 10:00 am 3:30 pm To be determined

     September 16, 2006 10:00 am 3:30 pm To be determined Page 1 of 8 REV 10 March 2006 November 18, 2006 10:00 am 3:30 pm To be determined DVA

    Next Meeting Date: [July 15, 2006]

    AGENDA

     1. Lunch and House Keeping

     2. Welcome

     3. Travel Vouchers/Parking Stickers/Consent Forms

     4. Introductions

     5. Power Point Presentation

     6. Data

     7. Lunch

     8. Questions and Discussion

     9. Evaluation

    10. Next Meeting

    11. Wrap-up

     MINUTES

    CO-CHAIRS Eric Friedlander presided at this meeting

    RECORDER Debbie Gilbert and Linda Miller

    TIMEKEEPER N/A

    [x] Beth Atherton [x] Kantor King

    [x] Katina Banks [ ] Amy Kirby

    [x] John Bell [x] Toni Moore

    [ ] Rhonda Bowlin [x] Valerie Morton

    [x] Mona Bush [ ] Missy Phillips

    [x] Amanda Comstock [x] Jay Rasmussen

    [x] Betty Cureington [x] Tara Sadler

    ATTENDEES [ ] Sandra Davis [x] Christi Scovel

    [ ] April Dyer [ ] Judy Settle

    [x] Larry Gayden [x] Anne Weaver

    [ ] Kim Heller [x] Karen White

    [x] Phillip Hobbs [x] Eric Friedlander

    [x] Anne Swinford [x] Lee Gordon

    [x] Debbie Gilbert [x] Sondra Gilbert

    [ ] Tisha Ziemer [x] Linda Miller

    Kathy Sherman, Nurse Administrator of the Commissions Hazard office; Liz Mann

    Social Worker at the Owensboro office; Josh Atherton, son of Beth Atherton; Sierra, GUESTS sister and personal care attendant for Kantor King; Cassie Moore, daughter of Toni Page 2 of 8 Moor; Mathew, son of Christy Schovel; Beth Mann, daughter of Liz Mann REV 10 March 2006 DVA

AGENDA TOPICS

    Eric Friedlander Items 1 to 3 30 minutes

    Eric Friedlander, Executive Director of the Commission for Children with Special Health Care

    Needs, welcomed everyone after taking care of house keeping items, travel vouchers and

    consent forms. The consent forms give permission to the Commission to release names of the

    PAC members in things like news articles to further the efforts of the Parent Advisory Council. DISCUSSION Eric also talked about future plans at the Commission. He provided information on the

    Medically Fragile Foster Child Program, plans to work with Home of the Innocent and

    expanding the use of telemedicine.

    CONCLUSIONS

    ACTION ITEMS PERSON RESPONSIBLE DEADLINE

    Eric Friedlander Introductions 30 minutes Eric Friedlander is the Executive Director of the Commission for Children with Special Health Care Needs.

    He has been with various agencies for the State that deal with special needs. He was with the Family

    Resource Youth Service Centers (FRYSC) and has the personal experience of a family member with Multiple

    Sclerosis. (Louisville)

    Phillip Hobbs, works at GE, is President of President of a Sickle Cell Support Group and AA. He came to have input. (Louisville)

    Tara Sadler is the parent of a child who is 5 years old and has Sickle Cell. (Louisville) Sondra Gilbert is the Parent Consultant for the CCSHCN in Owensboro and a KY SPIN Representative. She

    has three children with Muscular Dystrophy, one is in college, one is in high school and the other is in middle school. Sondra recently went to an AMCHP Conference in Washington D.C. (Owensboro) Beth Mann is a teen client of the Commission, she volunteers at the Commission and daughter to Liz Mann. (Owensboro)

    Liz Mann is the Social Worker in the Owensboro Commission office and parent of Beth. Beth has been with

    the Commission since she was 3 days old. (Owensboro)

    Ann Weaver has been a teacher in the Jefferson County Schools for 28 years. She has 3 children, 2 from

    her class room. The oldest has Down Syndrome and is Autistic, the youngest has Cerebral Palsy. The

    Commission found her; one of the nurses called her and told her about the program. Ann has always been an advocate for parents. (Louisville)

    Beth Atherton is also a teacher she is finishing her Masters in Special Education and a Rank 1 in Assistive

    Technology. One of Beth’s concerns is services in rural areas. She had to give up an accounting position because she could not find child care. (Calhoun) Page 3 of 8 Josh Atherton is the son of Beth, he is 15 years old. Josh has been part of Commission since he was 3. REV 10 March 2006 Mom, loves the Commission and thinks the staff is great. She also thinks Josh is cool kid. (Calhoun) DVA Linda Miller is the parent of a child with special health care needs. She is part of the Family and Children

    Support Services section of the Commission. (Cox’s Creek)

    Debbie Gilbert is the Kentucky Representative to Family Voices. She also works at the Commission as a Parent Consultant. She is also a parent of a child with special needs. (LaGrange)

Introductions Continued

    Beth Curetington is from Somerset. She is a full time volunteer and very passionate that kids get what they

    deserve. She had to fight to get her child, who made A’s and B’s on the honor role. Her daughter is who is

    10 has Turners Syndrome, a non-verbal learning disability, ADD, OCD, and ODD. (Somerset) Kantor King has been part of the Commission from the age 3 until she turned 21, her 20 month old son has the same condition she does. (Louisville)

    Sierrra King was in attendance as Personal Care Assistant to Kantor. (Louisville) Valerie Morton has a 19 year old with epilepsy and 7 year old with Walker Syndrome, CP and hearing loss. She is glad to be a part of the PAC. (Elizabethtown)

    Larry Gayden is originally from Mississippi. He is in the Military and will retire at the end of May. He is

    currently at Fort Knox. His son is 4 years old and hearing impaired. Larry is a home inspector and a realtor. Larry stayed in Ky because of Commission and is pleased with the Hardin County Schools. (Elizabethtown)

    Katina Banks is the parent of a 7 year old who has Epilepsy. (Lancaster) Anne Swinford is the Director of the Division of Quality and Outcomes. Anne is a Speech Pathologist and

    was involved with First Steps and is “lucky enough to be back at the Commission”. (Lexington) Jay Rasmussen moved here from Wisconsin 4 years ago. He feels doctors don’t always know what

    questions to ask. He is here more or less to find out what is out there to bring more to parents. (Louisville) Lee Gordon is the Transition Administrator at the Commission. He has been with the Commission 6 yrs,

    prior to that he was Nursing Home Administrator. He was paralyzed from the chest down in a car accident

    when he was 18. He is a college graduate, is married and has a 3 year old daughter. (Shepherdsville) Kathy Sherman is the Program Coordinator with the Commission in Hazard. She has been a nurse for 28 years, 16 years with the Commission, until then she never stayed with any job

    for more than 5 years. (Hazard)

    Mona Bush Kathy Sherman has been a real good friend. Mona’s son is 16, she adopted him in 97. He can’t

    hear. She has 3 daughters one with severe chronic kidney disease as well as a 6 and 9 year old with ADHD.

    She is an Avon Rep and has done a fund raiser for other Commission patients at Christmas. She enjoys

    helping people. She commented on how Kathy helped one of her friends sign up for KCHIP. Mona is proud of the Commission. (Hazard)

    John Bell has a special needs son. Though his son, he has had hands on experience with trachs, g-tubes and seizures. He is willing to work with others on these issues. His son graduated from Churchill Park. He wants it to be easier for parents than it was 25 years ago. (Louisville)

    Toni Moore is from Waddy. Her daughter, Kassie, is 2 and has an inside cleft and she also goes to hearing clinic, she also has epilepsy. It took her a long time to find Commission. It’s hard when you have don’t have

    help and don’t know where to go. She wants other families to know about the Commission. She was

    unaware that the Commission offered a seizure clinic. She was told by a doctor when Kassie was nine weeks

    to just suck it up and be a mom. (Waddy)

    Christi Scovel is from Elizabethtown and wants to be educated more about what resources are out there to

    help others. Families/people don’t know. She has an older child with diabetes and her son was also in

    attendance. (Elizabethtown)

    Matthew Scovel is 5 years old. He has Downs Syndrome. (Elizabethtown) Amanda Comstock has 2 daughters, one with cystic fibrosis, and 3 foster sons. The onsite nurse helped her get enrolled into the Commission. She is caught in middle class trap. They make to much money, but not enough to pay the bills. She teaches at Indiana Wesleyan and likes to help

    others.

    Karen White felt alone, but realized she wasn’t. She has 2 daughters with epilepsy and a son with ADHD.

    She wants to be more of an advocate for her children and wants her daughter to attend school at Churchill

    Park. (Lousiville)

     Page 4 of 8 REV 10 March 2006 DVA

    Eric Friedlander Power Point Presentation 60 minutes

    The presentation consisted of a brief history of the Commission for Children with Special

    Health Care Needs as well as some current information about locations, clinics and services

    offered. There was also a brief history of Title V and the Maternal and Child Health Bureau

    (MCHB). It also covered the 18 National Performance Measures from the MCHB block grant

    and the state performance measures. The Mission and Vision of the Commission was

    presented along with our guiding values and goals. It included information on Family Centered DISCUSSION Care and the Youth Advisory Council. Information was presented about guidelines and

    expectations for the Parent Advisory Council (PAC). The PAC will report to the Executive

    Director and to the Commission Board. The presentation ended with the goals of the meeting:

    To provide helpful ideas and practical tools to help you work collaboratively with health care

    providers and payors To encourage good consumerism in the health care system. To provide

    helpful ideas and practical tools to help you coordinate your child’s care. The final goal was to

    decide some of the next steps for the PAC. See attachment A/Power Point Presentation.

    CONCLUSIONS

    ACTION ITEMS PERSON RESPONSIBLE DEADLINE

    Eric Friedlander Data 15 minutes

    The data is a combination of the data from the State and Local Area Integrated Telephone

    Survey (SLAITIS), Kids Count, the U.S. Census and the National Data Archive on Child Abuse

    and Neglect. The information was broken down by county and Commission Districts. The

    Information available: Total population of county; the Child population by various ages and

    ethnicity; totals of Medicaid, KCHIP, KTAP, Food Stamp, SSI, free and reduced; issues; DISCUSSION percentage of Grandparents responsible for grandchildren; income for families with children

    and for single mothers This is the same data presented to the various Commission offices.

    Each office upon analyzing the data for their area developed strategies to build

    referral/resources networks within local communities to address the problems. An explanation

    of how each regional office did this is contained in the Biennial Report for 2003-2005. This

    was in the handouts provided. See attachment B/Biennial Report CONCLUSIONS

    ACTION ITEMS PERSON RESPONSIBLE DEADLINE

     Page 5 of 8 REV 10 March 2006 DVA

    Eric Friedlander Questions and Discussions 1 hour and 15 minutes

     This portion of the meeting was informal.

Eric told everyone that he was on the Special Education Advisory Panel. The issues that were

    discussed were: Education, public awareness about the Commission and other resources, Vocational Rehabilitation and life after 21.

When asked “How do you want to proceed?” These suggestions where made: To be able to

    communicate with each other, small groups, presentations and discussions.

Beth Atherton asked what would be done with the issues discussed. Eric said they will be

    shared with Special Education Advisory Panel, the Cabinet Secretary and Under Secretary.

    Eric also stated when the issues are presented to others; possible solutions from the PAC will

    also be included. At this point, Eric discussed the importance of talking to legislators and

    possibly addressing health and welfare or education sub-committees. Lee mentioned that one of his friends is a Lobbyist, said that when you speak to Legislators that they do check to see if you vote. So Lee urged everyone to register and to vote. Eric mentioned a presentation on

    how to talk to legislators could be done.

Eric asked what subjects should be covered and if there where any guest speakers they would

    like to see?

Jay Rasmussen suggested education, dealing with caring for a child with special needs and

    learning about different services.

No Child Left Behind was brought up. Eric commented on diploma vs. a certificate, and how

    some students fell in the middle was that it is a very controversial issue. During the

    introductions it was mentioned that students that get a certificate do not qualify for a job that requires a high school diploma. Eric also mentioned that the State Advisory Panel is in favor DISCUSSION of an alternate diploma.

Note: in Kentucky children on an Alternate Portfolio are not eligible for a diploma when they

    complete school they are given a certificate of completion. It is the understanding of Debbie

    Gilbert and Linda Miller that students graduating with a certificate are not eligible for most jobs

    requiring a high school diploma and are not accepted in to postsecondary schools. Other

    terms: this might also be referred to as diploma track or certificate track

Ann Weaver was concerned about Assessment and Alternate Portfolios and the level kids are

    going to have to achieve.

Toni Moore wanted physicians and other professionals to know and refer parents to the

    Commission.

    Valerie Morton said that there was one teacher, teaching grades 1 to 8 in one room, and she would like a tutor for her child.

Toni Moore said at the Commission clinics there could be more discussion between parents

    and more activities for the children.

    Beth Atherton: Talked about having an Advocate to go with you to ARC meetings; that when you are new to the system, you just don’t know.

Sondra Gilbert said that instead of going to the ARC meeting, she helps the parent prepare for

    it by going over the latest evaluations, she helps them prepare questions to ask. She said it

    could take up to 3 hours, and that IEP meetings can be very intimidating.

Beth Atherton brought up Wrightslaw as a resource.

     Page 6 of 8 REV 10 March 2006 DVA

    Note: Wrightslaw was founded by Pete and Pam Wright. There is a website,

    www.wrightslas.com , they offer trainings and newsletter and other information on special

    education law and advocacy for children with disabilities.

    Wrightslaw will be in Louisville on August 4, 2006, included is an information sheet about the

    training. Those interested in attending, as a group, should contact Linda Miller at 502-595-

    4459 x 304 or 1-800-232-1160 x 304.

    Someone asked about services for autism/mental health. Eric asked how can we create an environment to help think about other health pieces? There was no discussion of these at the time.

    See attachment C/Wrightslaw Information

    CONCLUSIONS

ACTION ITEMS

Eric Friedlander Evaluation

    DISCUSSION Participants were asked to complete an evaluation of the meeting. It consisted of four questions: 1. Were the information/materials presented helpful? 2. Would you like copies of any of the materials that where not give as handouts? If so what. 3. Are there information/materials you would like to see presented or given as handouts? If so what? 4. What can we do to make the meetings better? See attachment D/Complied evaluations.

CONSLUSIONS

    ACTION ITEMS PERSON RESPONSIBLE DEADLINE

     Page 7 of 8 REV 10 March 2006 DVA

Eric Friedlander Next Meeting and Wrap up

    DISCUSSION The following questions where asked: Do Saturday work well for attendees? Would you like to meet in

    other areas of the state? How often would you like to meet?

    rdCONSLUSIONS It was suggested that we meet every other month on the 3 Saturday. The next meeting will be held

    July 15, 2006. No location was picked at this meeting. An agenda should be sent out before the next meeting.

PERSON ACTION ITEMS DEADLINE RESPONSIBLE

    Linda Will send inquiry about location of next meeting out with minutes

OBSERVERS

    RESOURCE PERSONS

     SPECIAL NOTES

     Page 8 of 8 REV 10 March 2006 DVA

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