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.
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
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]
1. Lunch and House Keeping
3. Travel Vouchers/Parking Stickers/Consent Forms
5. Power Point Presentation
8. Questions and Discussion
10. Next Meeting
CO-CHAIRS Eric Friedlander presided at this meeting
RECORDER Debbie Gilbert and Linda Miller
[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
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.
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
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)
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
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
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
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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.
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
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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
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.
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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
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.
ACTION ITEMS PERSON RESPONSIBLE DEADLINE
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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
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