PWFA Fall Conference 2009

 Date:  Saturday, September 26, 2009

Location:  Regal Sun Resort, Orlando

Times:  8:30am  Registration & YAAP/YIP Drop off 

              9:00am  Parent Program 

Program Opening:

          President Michelle Torbert welcomed families and opened the program at 9:11am.  She introduced three first time families: 1)Tracy and James Kane, from St Petersburg, who have a 22month old; 2)Bonnie Austin, from Orlando, who has an 11 year old named Derek; 3)Monica and Robby Harris, from Lakeland, who have a 14month old. 

Michelle then had the room break into two groups.  Those interested in a discussion on adult issues went to another meeting room.  This group was led by John and Deborah Stallings.  Those who remained in the main conference room listened to a presentation by a representative from the Department of Health Children’s Medical Services. 

 Speaker:  Cherice Fleming Togun, Department of Health Children’s Medical Services

          Ms Togun began by handing out an information packet, and showing a DVD on Health Care for Children with Special Needs.  Children’s Medical Services (CMS) is a network comprised of multiple programs and services for eligible children with special health care needs. It is comprised of a whole team of specialists, located throughout the state of Florida.  According to Ms Togan, based on state statutes, Florida only requires a 20% delay to get services. Through a question and answer session the following information was relayed:

          *The first step in qualifying is to complete a Florida KidCare  application form, which can be picked up at a local CMS office, completed on line at www.cms-kids.com/CMSNetwork.htm, or acquired by calling their toll free number (1-888-540-5437)

          *65% is funded through Medicaid, and the program has not been affected by budget cuts.

            *There is a fairly short waiting period after the application is submitted, usually a couple of months.  Eligibility is evaluated both clinically and financially.

          *The program offers a Care/Support Coordinator that helps answer questions and coordinates services.  A new coordinator can be requested at any time.

          *There are 22 Area Offices statewide that are directed by CMS credentialed physicians.  Families should go on line (www.cms-kids.com)  to locate the regional office nearest them.

Ms Togun completed her session at 10:15am.

 Announcements:

          President Michelle Torbert welcomed those returning from the Breakout session. She  thanked the speaker and gave her a gift in appreciation.  She reminded the families about dues, the book table, and raffle tickets. Michelle then announced the next speaker, a representative from PWSA National.

Speaker:  Barbara McManus, PWSA National Director of Family Support

                 Topic: “What’s New and Exciting at National”

          Ms McManus began by introducing herself and detailing her history of experience with PWSA.  She then gave background information about the National Association, which is located in Sarasota, FL, with a staff of 11 dedicated employees (many part time).  She expounded on the various reasons people call, such as:  a new diagnosis, behavior concerns, weight problems,  school and medical issues, placement questions, and legal issues.  She then detailed the many services that National offers, including: advice and counsel, a variety of publications, referrals, mentoring, e-mail support groups, 24hr medical emergency support, current research information, and workshops.  She shared about the current passing of a dear and devoted friend of PWSA, Norma Rupe.  Donations in her honor are being accepted.

          Ms McManus went into National’s current efforts to increase awareness of PWS and their annual fundraising activities.  She touched on IPWSO, the International PWS Organization, and their upcoming Taiwan Conference in 2010.  She also stressed the importance and benefits to being actively involved in the State Chapter (PWFA).

          Ms McManus concluded by discussing the new upcoming Webinars. These are seminars that are available to be viewed on line. The first will be aired on Sunday, October 25, 2009, beginning at 7:00pm.  The topics covered include: New Medical Information about PWS and Tips on Surviving the Holidays.  The second scheduled seminar will be on Thursday, November 19, 2009, at 8:00pm.  The session topic will be, The Truth about Consequences:  Why Traditional Methods of Punishment Do Not Work for Individuals with PWS.  Each session runs between 45 minutes to an hour. The cost for each is $35.  Those interested in signing up or simply wanting more information can go to their website, www.pwsausa.org. 

Also, any family interested in helping with current medical research can partake in a variety of surveys available at www.pwsausa.org/population.  If anyone would like to contact Barbara McManus, she can be reached by email (bmcmanus@pwsausa.org) or phone (800-926-4797 ext. 734 or 941-487-6734).

 The session concluded at 10:50 am.  President Michelle Torbert thanked Barbara McManus and then presented the next speaker. 

Speaker:  Doris Landis Raskin, Attorney

          Ms Raskin began by introducing herself, her educational background which includes a Masters in Special Education, and her present activities as an attorney and an instructor of Law at a Jr. College. She shared about her experience in representing a middle school aged student with PWS. She expounded on three separate incidences that occurred with this student, and how he was handled by the school system and the authorities. Several families shared their similar incidents and added their input.

 Ms Raskin discussed Wrights Law/Federal Law in regards to special need children, Baker Acting and its misuse, and the need for greater understanding of PWS in the Public School System.  Throughout the session she touched on several important points:

          *It is important to be specific in your child’s Individualized Education Plan (IEP) and to be prepared for the annual IEP meeting.  Ms Raskin made available an informative packet that included tips to being ready for an IEP, as well as procedural safeguards (parental rights).

* All involved with your child should have a clear understanding of PWS. The PWSA has a lot of material geared toward educating school personnel on PWS (www.pwsausa.org).

          *A lot of problems can be avoided if the school Principal is part of the “team”, as well as all those that have contact with child, including:  teachers, cafeteria workers, librarian, school nurse, police, school resource officer, etc.

          *Know your rights and current ESE legislation; get a current copy of An Introduction to Exceptional Student Education from Florida’s Department of Education (www.fldoe.org/ese); go on line and investigate Wrights Law.

          *If a school incident occurs it is important to document everything, send letters to everyone, and to talk to all sources available.

Attorney Doris Landis Raskin can be reached by email at dlawraskin@bellsouth.net or by phone (904)287-2295.

 The session ended at 12:00pm, and President Michelle Torbert thanked the speaker, presented her with a gift of appreciation, and broke the meeting for lunch.

 The conference was reconvened at 1:14pm for a business meeting and to summarize the Board meeting.

Business Meeting

The following business was covered by President Michelle Torbert:

·        Introduced Michelle Wallace as a new Board Member and put out an invite to anyone interested in being a part of the Board.

·        Discussed the new website (www.pwfa.org) that was put together by Deborah Peaton.  She encouraged everyone to check it out if they haven’t already.

·        District Leaders have been established in various areas in the state with the role of contacting  and mentoring new families, as well as organizing a once a year area get-together.  Presently there are some areas in need of a District Leader: Area 4 which includes Baker, Clay, Duval, St Johns, and Nassau Counties; Area 12 which includes Flagler and Volusia Counties; Area 11 which includes Dade and Monroe Counties.

·        Explained the establishment of a Card Club which sends out Birthday cards to individuals with PWS, and the contest with the YAAP to design them. The top three will be chosen.

·        Another dues contest in being held.  All those who pay their dues before January 30, 2010 will be entered into a drawing for an Outback gift card.

·        Reported on the results of fundraisers held this year: Skip a Lunch ($1,182), Dress Down Day ($490), and Casting for a Cause (20,548.41)

·        The next Casting for a Cause Fundraiser, which is a combined backwater/flats and deepwater fishing tournament coordinated by Michelle Torbert, will be held March 4-7, 2010,  in South Florida.  Besides the tournament, there will be a catered Kickoff Dinner, a Family Fun Day, and an awards banquet. Both volunteers and sponsors are needed.  For more information check the website.             

·        Along with the District Leaders as contacts, a list of “go to” people (liaisons) that specialize in specific areas, is in the process of being compiled. A few specialized areas mentioned included:  help in accessing services, insurance/Medicaid questions, school issues, need to vent (compassion ministry), Spanish speakers, and group home living. Anyone interested in helping or has a specific area idea, was encouraged to contact Michelle (PWFA2007@aol.com). Once a concrete list is formulated it will be posted on the PWFA website.

·        The PWFA Spring Conference will more than likely be held as a family picnic at Quiet Waters Park in Deerfield, which would include a BBQ, games, and a walk-a-thon.  As more details are known, information will be posted on the website and in the Gator Willi Newsletter.

The business meeting ended at 1:30, and President Torbert introduced the next speakers, from Project Wings.

Speakers:  Barbara Coenson, Attorney and Jeff Rupp, Special Needs Financial Advisor

Topic:  “Affordable Aspects of Legal and Financial Planning for Children with  Special Needs and the Rest of your Family”       

Project Wings provides information and resources to families, covering the legal and financial aspects of raising a child with special needs, and educating them on how to prepare for the future.  The  founder’s husband, Jeff Rupp, who is a Special Needs Financial Advisor, began the session by discussing the benefits of establishing a Special Needs Trust (SNT). He explained how public assistance, such as SSI, can be lost if an estate of more than $2000 is left to the child.  An SNT manages the resources for the benefit of the child without jeopardizing their public benefits. He covered the details of how an SNT works, the many things it can be used for to help secure the child’s future, and the importance of getting it established as soon as possible.  He stated that it can be put in one’s Will their desire for a Special Needs Trust be set up at their death.  Funds would be managed by a Trustee.  The Trust can be funded through property, investments, and/or Life Insurance.  Mr. Rupp listed the benefits of Life Insurance funding, which included: freedom from probate and estate taxes, creates an estate where none exists, leaves an existing estate intact, and provides guarantees.  He went on to explain the different types of Life Insurance and recommended Survivorship as the best one to fund an SNT, since it covers two lives under one policy. 

Attorney Barbara Coenson discussed Guardianship, in which a person is given the power to make decisions for another who is unable to make their own decisions.  It can only be appointed by the court.  She also explained how it differs from a Guardian Advocate, which has less requirements and formality, and the child keeps some rights.  A parent automatically has Guardianship until a child is 18.  If there is a need to maintain Guardianship, then the court will need to be petitioned.  She recommended putting the paperwork together when the child is 17.  She also discussed Emergency Temporary Guardianship, that takes about 5 days to process and is good for 90 days, until full Guardianship can be obtained. 

After a question and answer time, the session was concluded at 2:30pm, and President Michelle Torbert  thanked the speakers and announced a 10 minute break.

The conference was called back to order at 2:50pm and an open forum was announced. 

 Open Forum

          President Michelle Torbert asked the families to share any helpful resources they have found.  Tia Reck shared about a foundation, called GRATTO, that helps with free dental care for children with special needs.  She put together a really nice display board with all the information.   More about this foundation can be found on their website: www.scgratto.com.

          Michelle encouraged families to inform PWFA of any doctors, dentists, therapists, etc. that are good at working with PWS children.  She also made the suggestion of taking information about PWS to local doctor offices, hospitals, clinics, etc. as a way of increasing awareness, as well as seeking businesses to make PWS their charity of choice.

In conclusion, President Torbert reminded everyone to use the Shop-to-Earn, available through the PWFA website, whenever they are shopping on line, since a % goes to the association.

 The conference ended with a fun-filled raffle.