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AMAZING CARE FOR AMAZING INDIVIDUALSPrader-Willi Syndrome Care Coordination

There's nothing simple about Prader-Willi syndrome - and there's no place in the world that understands it better.

The Children's Institute has a long history of caring for children and adults with Prader-Willi syndrome (PWS). Our care coordination program helps persons with PWS and their families - no matter where they are located in the world - follow a care plan that supports overall physical and behavioral health. 
 

PWS Care Coordination: What We Do

The Prader-Willi Syndrome (PWS) Care Coordination program meets the individual and family where they are. A Care Coordination plan is created and goals outlined on the plan are achieved through regular support that is provided by a Care Support Coordinator. Services in this program can also be modified to support clients who are diagnosed with Smith-Magenis syndrome and other obesity-related disorders.
Young boy with PWS with nutritious meal

Care Coordination Plan

All goals are individualized based on the needs of the client and family. Goals outlined on a plan may include:
  • Assistance with PWS-specific diets and weight management
  • Consultation and training about PWS to all stakeholders, including but not limited to: school teams, medical providers, community agencies, and more
  • Exploring the possibility of residential placement
  • Behavioral support
  • Identification of community resources and providers
  • Support for overall health and wellness of the entire family
Young girl with PWS smiling

Meeting the Level of Need

PWS Care Coordination is a fee-based service with levels customized based on the level of client need. Level 3 and Level 4 include a full success kit with onboarding of these levels of service.
  • Core Services Level 1: Approximately 10 hours/3 months of service
  • Basic Services Level 2: Approximately 20 hours/3 months of service
  • Extended Services Level 3: Approximately 30 hours/6 months of service
  • Intensive Services Level 4: Approximately 40 hours/6 months of service
Young boy with PWS holding pencil

Additional Services

In addition to various levels of care and plan to move forward, our amazing team is dedicated to making sure all clients and families have the time and tools they need to succeed. Additional services may be added to any PWS Care Coordination package or purchased individually.
  • Hourly Care Coordination
  • On-Site Observation
  • Success Kit
The success kit includes: Stainless steel measuring cups, measuring spoons, exercise band, wallet card for legal situations, IEP meeting card, kitchen food scale, bathroom/weight scale, a FitBit, and 2 Marine locks for food security.

Red, Yellow, Green System for Weight Control

Our easy-to-use guide for weight control and nutrition has proven successful for individuals with Prader-Willi syndrome. Follow this simple system to help ease food anxiety and move forward on a healthier path.

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Professional Education and Consultation Services

Professional education and consultation services are available for a variety of audiences including group homes, school districts, community agencies, and others who are caring for a person with Prader-Willi syndrome.

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It takes a caring and compassionate team.

While there is no cure for Prader-Willi syndrome, there is hope. PWS is a lifelong condition, so our caring team is here to help our clients and families prepare for the future, every step of the way.

Brandi Marsh

Care Support Coordinator
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Hunter Milroy, MSS

Care Support Coordinator
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Lucy Krut, BSN, RN

Care Support Coordinator
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Amy McTighe, Ph.D.

Amy McTighe, Ph.D.

Director of Care Coordination
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Take Control of Life with PWS Today

We invite you to please fill out our inquiry form so we can connect to complete a level assessment and jumpstart enrollment in our Prader-Willi syndrome care coordination services. 

Get Started

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Not sure what the next step is? You can always call our Information Center at 412.420.2400 to speak to a team member who can direct you to the support and answers you need.

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