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Parents report concerns in two major areas of residential programs: communication and staff training. Below are some ideas you might want to consider in addressing those broad concerns which, most likely, you share.


  • Develop communication protocols for parents, so they know who to talk to about what and when (e.g., calling the residence during peak program time to talk with direct support staff is not a good idea. Calling or meeting with the manager when they can have an uninterrupted, private conversation is a much better idea).
  • Establish program routines, schedules, paperwork, and accountability systems prior to opening the program and review periodically.
  • Develop clear program policies and procedures and review with parents prior to admission. Include policies on phone calls, visitation, searches, weight management, behavior management, and anything else that guides your residential programming.
  • For new (or troubled) programs, hold monthly parent meetings (if enough family members live within the area). Have an agenda; include as many staff as possible and invite the dietician, behavior specialist, nursing staff, and any other involved clinicians to share their work and answer questions. Provide families with their child’s monthly weight record, report on planned recreational and social events, discuss any changes or issues that have arisen since the last meeting, and solicit ideas for improvement. Keep it structured and upbeat with opportunities for everyone to contribute, without it becoming a gripe session. You will find that parents will ask to reduce the frequency of meetings over time as they come to know (or come to know you anew) and trust you. (If a meeting isn’t feasible send out monthly weight charts and activity schedules to families).
  • Establish “traditions” in which families contribute; such as the annual summer barbeque, the holiday party, the anniversary of residency for the individuals, birthday celebrations, agency events…
  • Establish a schedule of parent contact via phone or email, especially for those families who do not have frequent on-site contact. Let them know what their son/daughter has been doing. Share a story or two. Fill them in on planned events. Don’t wait for a crisis to pick up the phone. Sharing the positives builds trust and respect and a belief that you truly care about their child
  • Be honest with families. Tell them what is going on and ask for help when you need it. If you messed up-admit it-apologize-institute corrective action-and move on. The more we acknowledge that caring for an individual with PWS is not an exact science and that we are all simply human and doing our best, the stronger the bond will be. Put your energy into progress not patchwork.
  • Respond promptly (within the day-no more than 24 hours) to parent concerns/requests even if your response is “I don’t know yet.” It’s disturbing to think that the folks who care for your child don’t take you or your concerns seriously.
  • Enlist the parents to support you in working out conflicts with your monitoring and funding agencies. They can be extremely effective advocates on issues you all care about. Parents want the program to succeed just as much as you do.


  • Identify and support someone in your agency (director, manager, clinician-someone who will be around for awhile) to become expert in PWS.
  • Develop a training program specific to Prader-Willi syndrome. Utilize experts in the field and parents. Invite your funding and licensing agencies such as the State Department of Mental Retardation and Developmental Disabilities (or your state equivalent) so they can learn about the uniqueness of PWS and the need for specially designed services so that they have a stake in your program.
  • Develop an in-house handbook of essential information, including a personal profile of each resident (nothing too clinical—likes, dislikes, idiosyncrasies). Involve the family in this and update at least annually.
  • Establish a routine and on-going schedule of PWS training for “old” and new staff. Contact PWSA/USA for a list of resources, including educational DVD’s, books, newsletters, research articles…Create a training program and handbook with these materials to be reviewed with new staff by your agency PWS expert. Become a member of PWSA/USA and when you receive your copy of The Gathered View newsletter-distribute it and discuss at your next staff meeting. Reading an article or viewing a video is not nearly as effective a learning experience as reading, watching, and discussing!
  • Join your local or regional Prader-Willi Association. Go to conferences. Bring back the information and share at staff meetings. Meet and stay in touch with other providers.
  • Consider a one day annual retreat to assess progress, brainstorm strategies, review and revise existing routines and practices, and establish new goals for the next year. Remember, the individuals are changing-so be sure to keep up with them and keep your services fresh and interesting. Make your home a place where people want to be or they may take it upon themselves to change things in a way that you aren’t prepared for.
  • Establish a mentoring program for new staff, so that they are paired with someone more experienced for a specified period of time.
  • Give your direct support staff responsibilities that are meaningful and challenging and train them in those responsibilities.
  • Remember, well prepared staff members who are treated as professionals are much more likely to stay within the program and do a good job than those who are "thrown into” the residence to sink or swim.


 edited: 02/09/2012

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