Knowledge Is Power

It is said that knowledge is power.  This certainly is true for parents of students with PWS.  Knowing how to find and use information is an important special advocacy skill for parents.  Below is some information, from the Special Education Law Symposium, I hope parents find helpful:

  • IDEA funding levels remains a big issue of concern for schools across the country.  For FY 2014, IDEA federal funding covered 16 percent of the estimated excess cost of educating children with disabilities, less than in FY 2008 when federal funding covered 17 percent of the cost and well below FY 2009 when additional funding through the American Recovery and Reinvestment Act covered 33 percent of the cost. IDEA Part B “full funding” for FY 2014 would have amounted to approximately $28.65 billion, or roughly $17.17 billion more than was actually appropriated. The shortfall in IDEA funding has been assumed by the states and local school districts. Source:  http://febp.newamerica.net/background-analysis/individuals-disabilities-education-act-funding-distribution
  • The Schoolwide Integrated Framework for Transformation (SWIFT) center and related schools are developing an interesting school model designed to bridge general and specialized education settings to create powerful learning opportunities for students and teachers and promote active, engaged partnerships among families and community members.  To learn more visit http://www.swiftschools.org/
  • Positive Behavioral Interventions and Supports (PBIS) are an important support needed for students with disabilities.  The U.S. Department of Education’s Office of Special Education Programs (OSEP) has created a website that includes information for parents to explain PBIS in school settings.  To learn more visit https://www.pbis.org/
  • The Office of Special Education and Rehabilitative Services (OSERS) is an important agency for parents of children with disabilities.  The OSER website explains, “OSERS is committed to improving results and outcomes for people with disabilities of all ages. OSERS supports programs that serve millions of children, youth and adults with disabilities”.  To learn more about OSERS visit http://www2.ed.gov/about/offices/list/osers/index.html
  • The Office of Special Education Programs (OSEP), an agency under OSERS, is particularly important for parents of students with disabilities.  THE OSEP website explains OSEP “is dedicated to improving results for infants, toddlers, children and youth with disabilities ages birth through 21 by providing leadership and financial support to assist states and local districts.”  OSEP offers updates on IDEA funding, special education policies, program development and more.  To learn more about OSEP visit http://www2.ed.gov/about/offices/list/osers/osep/index.html
  • OSEP also publishes on a regular basis policy guidelines/letters on a number of important topics related to issues of concern for students with disabilities.  These letters provide useful information and guidance for parents and IEP teams. To find out more about OSEP letters visit

http://www2.ed.gov/policy/speced/guid/idea/memosdcltrs/index.html

  • Issues of student privacy can be confusing to parents.  So it is very important for every parent of a student with a disability to understand the Family Educational Rights and Privacy Act (FERPA) which governs the privacy protections of students.  Visit this website to learn more about this important issue http://www2.ed.gov/policy/gen/guid/fpco/ferpa/index.html

-Evan Farrar, PWSA (USA) Family Support Counselor

Note:  I am attending the Special Education Law Symposium at Lehigh University this week.  For updates, please follow this blog and follow me on twitter @evanearlfarrar

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Word of the Day: Complexity

Lehigh Special Education SymposiumThe word of the day for me is complexity because each speaker at the Special Education Law Symposium makes a point of emphasizing the complexity of special education law and the special education system.  The reasons for this complexity are many including:

  • The inherent ambiguity of legislation passed by congress.
  • The various legal interpretations from judges and attorneys.
  • The individual and varied needs of students with disabilities as identified by parents, advocates, and school professionals.
  • The hidden factors that can influence the creation of special education services – including school budget concerns, frequently overburdened school systems and parents, and from time to time the competing interests of all involved in the process.
  • The sheer scope of issues covered by special education law including everything from what qualifies a child for special education services to how services are planned and maintained for a student with a disability throughout the course of their educational career.

Throw into the mix that states and local school districts can have their own special education laws or policies and procedures and you begin to understand why, by its nature, special education law is so complex.

So what can parents of a school aged child with PWS do to equip themselves to navigate the often murky waters of special education law and the special education system?

In the spirit of school summer break, I would like to offer some homework assignments for parents.  Don’t worry, no quiz will be given!  But hopefully, if you work on some of these suggested assignments you will feel more confident working with the special education system for your child.

  1. Summer is a great time to catch up on your PWS school planning.

Continue to learn as much as you possibly can about the educational needs of your child.  Utilize PWSA (USA’s) school materials like the School Portfolio to create and maintain a good educational profile of your child you can share with teachers and IEP team members throughout your child’s school years.  Your input is critically important to help school professionals understand the individual needs of your child.  Also, take time to review any PWS specific educational materials you can.  This includes PWSA (USA)’s DVD for Educators which is one of the best resources we have for school professionals. It is good for parents to watch too!

  1. Summer is a perfect time to think through your IEP team building strategy for next year.

Special education works best when the heart and soul of the special education process – the IEP team – works effectively together.  This includes the vital task of positively problem solving as a collaborative team.  An understanding of special education law is important but so is learning to build healthy relationships with your child’s principal, teacher, and other school professionals on the IEP team.  Those relationships – if strong – will give the entire IEP team a good foundation for dealing effectively and respectfully with disagreements when they emerge.  So do some reading this summer on negotiating, team building, and advocacy.  Also, if you have some school professionals on the IEP team you really appreciate – send them a note over the summer to say thanks for the support they give your child.

  1. Summer is a great time for a research project.

A good topic is learning more about the IDEA and Section 504 – the two major federal special education laws.  The links below will get you started.

http://idea.ed.gov/

http://www.wrightslaw.com/info/sec504.index.htm

Looking for some extra credit?

  • Find out when the next Wrights Law parent advocacy training is in your area (www.wrightslaw.com) and make plans to attend.  If attending is a financial hardship ask your state chapter leader to contact me to see if PWSA (USA) can provide you with a scholarship to help you attend.  Supporting your advocacy training is one of the best investments PWSA (USA) can make in you and your child’s future.
  • Get to know your state Parent and Information Training Centers https://wdcrobcolp01.ed.gov/Programs/EROD/org_list.cfm?category_cd=SPT to to learn more about resources they offer.
  • Send me an e-mail at cic3@pwsausa.org to sign up for the PWSA (USA) e-letter exclusively about school issues called School Times. Oh, and don’t forget to take some time for yourself this summer.  Practicing good self-care is one of the most important things you can do for your child.

-Evan Farrar, PWSA (USA) Family Support Counselor

Note:  I am attending the Special Education Law Symposium at Lehigh University this week.  For updates, please follow this blog and follow me on twitter @evanearlfarrar

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Agents of Change for Prader-Willi Syndrome

This week I am representing PWSA (USA) and the PWS community at the Special Education Law Symposium sponsored by the College of Education at Lehigh University in Bethlehem, PA.  Today the keynote address was given by Michael Yudin who is the

 acting Assistant Secretary of the Office of Special Education and Rehabilitative Services at the US Department of Education.  During his presentation, Mr. Yudin called parents of children with disabilities “agents of change” because they push schools to believe and expect that more is possible for their children.  This parental expectation, in turn, drives schools to provide better services and supports to help students with disabilities to succeed academically and socially.

It was a great reminder that we all have a vital role to play in helping children with PWS to be successful in school.  It isn’t only the responsibility of parents in the PWS community to be agents of change for schools.  It is also a responsibility of PWSA (USA).  I am at this symposium because PWSA (USA) recognizes this responsibility and the importance of networking with other professionals in the special education field to learn as much as we possibly can about how to help parents and schools work effectively together to support students with PWS.  So over the next few days I hope to find some answers and resources for some of the educational challenges our community faces.  At the same time, I will share with others what we’ve learned through our PWSA (USA) special education advocacy program which is unique in the rare genetic disease community.

Mr. Yudin also said, “If you give a child an opportunity to learn, they will succeed.”  This is a core belief we share in the PWS community.  Students with PWS want to learn.  They want to do well at school.  They want to succeed as students.  And, when given the appropriate support and services, they do!

If you would like to learn more about what I’m learning at the Special Education Law Symposium this week please follow this blog and follow me on twitter @evanearlfarrar

-Evan Farrar, PWSA (USA) Family Support Counselor

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FDA Meeting with Prader-Willi Syndrome Representatives

(Left to Right) Jim Kane, PWSA (USA) Research Advocacy Chair; Janalee Heinemann, PWSA (USA) Director Of Research & Medical Affairs;  Rob Lutz, PWS (USA) board member and coordinator of the PWS Collaborative Therapeutic Development Team; Theresa Strong, FPWR Scientific Advisory Board Chair and board member

(Left to Right) Jim Kane, PWSA (USA) Research Advocacy Chair; Janalee Heinemann, PWSA (USA) Director Of Research & Medical Affairs; Rob Lutz, PWS (USA) board member and coordinator of the PWS Collaborative Therapeutic Development Team; Theresa Strong, FPWR Scientific Advisory Board Chair and board member

We have just come back from a meeting we had in DC representing Prader-Willi syndrome as patient advocates with the FDA. With several drugs in the pipeline that could potentially be significantly helpful to PWS, we want to make sure that the FDA has all of the information they need on the syndrome, and to know the potential need for accelerating these drug studies. This has been a collaborative effort between PWSA USA and FPWR. We were excited to find out that several divisions of FDA were eager to learn more about PWS, and 15 key people from 7-8 divisions within the FDA attended the meeting. Representing Prader-Willi syndrome at the meeting was our dynamic foursome (see picture). Special thanks goes to Jim Kane who put together the extensive leave behind packet of materials and information to which we all contributed, and to Kerry Headley who helped design the packet. We were told by one person that it was the most comprehensive and professional looking packet they have ever seen from advocacy group.  Also, we want to thank the National Organization for Rare Disorders (NORD) for advising us and financially supporting our travel. The long term goal is to establish an ongoing relationship with the FDA, and we are well on our way due to this groundbreaking meeting.

This is exciting times – never before in my 30+ years with the Association have I seen this much interest by pharmaceutical companies in developing drugs that will benefit our children!

Janalee Heinemann

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Jennifer’s Story

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Our beautiful daughter, Chelsea, was born September 19, 2013, on her late-grandmother’s birthday. It was a very special day. As the obstetrician was delivering her, he said, “Look at all the blonde hair!” In an instant I knew something was not right, but I had faith that everything would be ok. I delivered Chelsea via c-section and she spent the first three days of her life in the room with mommy and daddy at the hospital. She would hardly wake to feed, and my hopes to breastfeed pretty much evaporated within the first day. Doctors were not overly concerned with her “floppy” state, or that she hadn’t had hardly a drop of milk in twelve hours! I knew in my heart that something was wrong. By day three of poor feedings at the bottle, mommy was discharged from the hospital and Chelsea was moved to the NICU (neonatal intensive care unit). We were told by the geneticist that she suspected Chelsea had Prader-Willi Syndrome, characterized by her fair features, almond-shaped eyes, and hypotonia (severely low muscle tone). We were told she would most likely spend two to three months in the hospital NICU, and that when she did go home, it would be with a feeding tube. We were devastated! Our poor little baby…how could this be? She was quite dehydrated and spent a few days on IV, and with supported oxygen, and a feeding tube, but when she gained back her strength we were able to remove all three! Our little girl was discharged after two weeks, not two months, and went home feeding from a bottle! The geneticist referred to her as an “All-Star” and said she’d never seen such strength in a baby with PWS. That’s not to say Chelsea was toned and alert when she got home. Bottle feedings were hard on mommy and daddy and Chelsea slept so much of the day away. Every day she gets stronger though! She is very busy with physical therapy three times a week, developmental therapy once a week, not to mention the weekly visits to numerous doctors, which include: pediatrician, geneticist, feeding and speech therapist, endocrinologist, pulmonologist, chiropractor…I’m sure I’m forgetting some. Chelsea truly is a loving, angelic child, and my hope for her is that she loves this life and all the wonderful things it has to offer her, despite the struggles that her syndrome will no doubt cause her.

About PWS: Prader-Willi Syndrome (PWS) is a complex, life threatening medical disorder that affects the body’s hormone system; muscle strength; pain, sleep and temperature regulation; cognition and learning; behavior and appetite. For persons with PWS, the brain does not regulate emotions and appetite normally.Behavior problems are common, worsened by an unrelenting, overriding physiological drive to eat. Normal satiety, the feeling of fullness after eating, does not exist. Undiagnosed, unmanaged and without 24/7 supervision, Prader-Willi Syndrome leads to obesity-related illness and premature death. Prader-Willi Syndrome is one of the 10 most common syndromes seen in genetic clinics and the most common genetic cause of obesity. Although research has made great strides to increase our understanding of Prader-Willi Syndrome, there is no treatment to control or even reduce the insatiable appetite, no medication to treat all of the behavior and psychiatric symptoms. There is no cure, but with your help, there is hope!

 We ask for your support in raising money for a foundation that supports us in our journey, and in the research efforts to finding a cure!  Many thanks for all your support.

- Jennifer Valentine

 CLICK HERE TO SEE JENNIFER’S FUNDRAISING PAGE

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A Book of Bullies by Katherine Stanley

Author Katherine Stanley discusses her book, A BOOK OF BULLIES. Born with a genetic condition, Prader-Willi Syndrome, Katherine has been the victim of bullying. Her book puts the spotlight on the hurt and harm caused by bullying and calls for us all to unite against it. For more information on how to buy one of the books contact us at (800) 926-4797

Author Katherine Stanley discusses her new book, A BOOK OF BULLIES. Born with a genetic condition, Prader-Willi Syndrome, Katherine has been the victim of bu…
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PWSA (USA) 2014 Grant Submission Information & Requirements

Prader-Willi Syndrome Association (USA) has been funding research grants for 31 years. We are pleased to announce the beginning of a new grant cycle to offer grant assistance for scientific researchers with an interest in improving the lives of those with Prader-Willi syndrome. PWS). PWSA(USA) is especially interested in supporting research projects that have the potential for immediate and high impact to the PWS community. The goal is to fast-track better treatment for the syndrome.

A request for proposals (RFP) will go out personally to hundreds of clinicians and researchers on our mailing list, but you are also welcome to forward the information to anyone who may have a special interest in PWS research. Please click the following link for further information. PWSA (USA) 2014 Grant Submission Information & Requirements

Janalee Heinemann, MSW

PWSA (USA) Director of Research & Medical Affairs

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May Is Prader-Willi Syndrome Awareness Month

 It is officially Prader-Willi Syndrome Awareness Month!  May is a time for friends and families around the country to spring into action for Prader-Willi Syndrome. We can all make a positive difference in the lives of those living with PWS by becoming involved and spreading awareness this May. Below are some ways you can make this May count!

 

 

 

 

Spread Awareness and Fundraise OnlinePrader-Willi Syndrome Association (USA) makes it easy to spread awareness and fundraise onlineIf you want to set up your own fundraiser/awareness page online for FREE: 

  1. Go to “PWSA On The Move 2014
  2. Click the green “Fundraise” button
  3. Set up your own fundraising page and start sharing with friends and family through the simple email and social media tools

Facebook

Show Some Facebook Love:
  • Change Your Profile Picture and Cover Photo
  • Share an Awareness Video via social media
  • Inform your friends and family about upcoming events, news, stories and activities on your facebook wall.  See more here

 

 

AttendEvent

 

 

 

 

Attend an  Events Across The Country:

There are tons of Prader-Willi Syndrome Awareness events and activities springing up all across the country. Consider attending an event or find out more information about all events and activities here

 

 

Logo

 

 

 

 

Get Prader-Willi Syndrome Awareness Logo Items:

The PWSA (USA) Logo Items are a unifying symbol of hope and awareness in our community.  Last year, hundreds of “On The Move” logo items were distributed nationwide and were worn by advocates just like you in support of PWS Awareness.  This year we have a new logo and new products that we are sure you will enjoy! To order today contact Pam Ferrara at 941-312-0400 or email pferrara@pwsausa.org.

 

PlanEvent

 

 

 

 

Plan An Event: 

Through Firstgiving you can set up your event, ask participants for donations online through emails and social media, and registrations are automated through the process.

 

If you want to have an “On The Move” Event:

 

  1. We will create a FirstGiving event and send you a log-in ID & password
  2. Log-in and add event information and pictures to customize your event page
  3. Send emails or post to your social network using the easy to use tools for registration and donations

 

 

ShareEvent

 

 

 

 

 

Share Your Event:

Already hosting an event? We would love to hear about it. Submit your event here and we will post it on our website, share it in our community blog and social media outlets .

 

 

 

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More Ways To Get Involved: 

For more information on how you can get involved this May call Ben Karp, Communications Specialist for PWSA (USA) at 941-312-0400 or email bkarp@pwsausa.org

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David Wyatt: The Wealth Of A Man

Evan Farrar and David Wyatt together last summer at the David Wyatt Special Education Advocacy Training (WSEAT) in Sarasota

David A. Wyatt, 82, of Siesta Key Florida, died peacefully April 9, 2014. He was born in Amarillo Texas. He was ordained as a Methodist minister who spent most of his career as a chaplain.

After retirement, David served as PWSA (USA)’s first Crisis Intervention Counselor initially as a volunteer and then as a member of PWSA (USA)’s staff.  In this role David assisted families across the nation and built the foundation for PWSA (USA)’s Crisis and Family Support programs.  These programs continued to grow with his guidance and benefitted from his generosity of spirit, kindness, and professionalism.  After retiring from his staff position with PWSA (USA) David served as PWSA (USA)’s Crisis Counselor Emeritus and was a great colleague and resource for PWSA (USA)’s Family Support Team.

In 2013, PWSA (USA) created the national Wyatt Special Education Advocacy Training (WSEAT) named in honor of David to recognize David’s extraordinary advocacy work for people living with PWS.  David was a strong human rights advocate throughout his life.

David was the beloved father of Deborah Wyatt M.D. of San Francisco, and her spouse Andree Hest, Todd Wyatt, daughter-in-law Carrie, and grandfather of Garrett and Everett Wyatt of Pleasanton, CA. He was preceded in death by his four-year-old daughter, Dana. David was also the beloved adopted family member of Janalee and Al Heinemann, with whom he lived, and their children: Sarah and Chris Tenaglia, Tad and Gina Tomaseski, Tracy and Jeff White, Tina and John Kiel, and Matt Heinemann.David was loved by many, and will be remembered for his kind spirit, gentle heart, smiling face, and joy of life.

A memorial service will be at a later date at MCC/Church of the Trinity.

Donations may go to the church or to the Prader-Willi Syndrome Association (USA), 8588 Potter Park Dr., Suite 500, Sarasota, FL 34238.

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Joe’s Mission for Prader-Willi Syndrome

Miles 4 Siena 744b6e9d-ff37-4bf5-ad99-159d03eb79d9

On September 11, 2012, my baby cousin Siena was born. Shortly after, Siena was diagnosed with Prader Willi Syndrome (PWS), a rare genetic disorder that occurs in only 1 of 15,000 births. PWS typically causes low muscle tone, short stature, incomplete sexual development, developmental delays, and a chronic feeling of hunger that, coupled with a metabolism that utilizes drastically fewer calories than normal, can lead to excessive eating and life-threatening obesity.

Over the last year and a half, I have watched my cousin John and his wife Felicia devote their lives to raising Siena and making sure she lives as normal of a life as possible. Each day has been its own adventure, each one containing its own struggle, success story, and next step to helping Siena.

Currently, there is no cure for Prader Willi Syndrome. That’s where you and I can help. This May, I will be running the Cox Providence Marathon to raise money for Prader Willi Syndrome. I urge you to donate, because the struggle Siena and her parents have endured in only a year and a half’s time will only continue. Training for a marathon is tough, but Siena is the toughest person I know.Please click the green button to make your donation, and stay tuned for more updates. Tell your friends, and be sure to make #Miles4Siena go viral! -Joe DiMuccio

 Click Here To Donate To Joe’s Event Page

 Click Here To Create Your Own Page For The Person You Love

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