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PWSA | USA’s Family Support Team Recaps January, February Community Conversations

January Community Conversation: Guardianship

Lisa Thornton is not only a parent of a young woman with PWS, but she is an attorney with a lot of experience navigating guardianship and special needs trusts. If, when, and how to apply for guardianship is often a daunting process for parents. Coupled with every state having different processes, parents are not always sure where to turn. Lisa shared why obtaining full guardianship is important and how Utah may differ from other states. For example, because of great advocacy, you no longer need an attorney in Utah when applying for guardianship. The courts have placed all the necessary paperwork online, hearings take place through WebEx, and the cost is $55. On average, the entire process takes less than two months! Other parents shared their experience with applying for guardianship in their respective states and none were as efficient or cost effective as Utah's process. Below are a few takeaways from the conversation:

  • Start the process early so guardianship can be in place when your loved one turns 18.
  • Rather than name “back-up” guardians, name co-guardians.
  • Professional guardians are a good option for those who are concerned about transfer of guardianship when they no longer can provide that support.

February Community Conversation: Therapy Challenges

Abbie Olgilbee, mom to a child with PWS and Physical Therapist, joined us to answer questions related to therapy challenges. Therapy intensives are becoming more popular, and Abbie shared the pros and cons of participating in them. A notable positive is the rate at which individuals make progress during an intensive, while a notable negative or barrier for families is the cost involved. Some common questions were: Is it okay to take a break? Why does it seem like my child forgets skills they have learned? How can I work on the same things at home? How can I relay what my therapist learned in an intensive to their regular therapist? Abbie’s thoughts are below.

  • It’s okay to take a break! Summers are a great time to take a break and explore. Children learn so much through natural exploration.
  • Children often have a brain burst where they are making gains in one area, while seemingly regressing in others. This often lasts a couple of weeks and then the skills reemerge.
  • Take pictures or videos of what the therapist is doing with your child so you can do it at home or share with your regular therapist.

PWSA | USA's next Community Conversation will be held March 15th at 8pm EST and will focus on sleep issues in PWS. Register in advance by clicking here. We hope to see you there!

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