Making the decision to seek
residential services for your child can be a difficult emotional
process. Allowing your child to live, learn and grow in a PWS community,
away from home can be one of the most loving and selfless things that a
family can do. If and when you are faced with making that decision here
is what to look for in a residential provider:
1. Are they
active in national and/or international PWS groups? Does the agency
participate in conferences or in any way further their knowledge by
keeping up with the latest research and best practices? I can't stress
this enough. We are in the middle of an explosion of new treatments and
practices, does the agency you are considering stay abreast of these?
2.
How does this agency resolve conflict or disagreements with families in
regard to treatment? Families are the experts in their children, they
know them far more intimately than a residential provider but providers
are experts in long term care and the steps needed to achieve goals and
be successful. Are parents an active part of the treatment team?
3.
Is the agency strength based as opposed to restrictive? Any PWS provider
will restrict food access but aside from that, are there practices that
allow for your child to achieve their potential using positive methods?
Look for a program that increases positive experiences for wanted
behaviors as opposed to taking things away for unwanted behaviors.
4.
Are other parents satisfied with the care their child receives? This
will be a large indicator for you when you are making this decision.
Parents who feel comfortable and satisfied with the care their child
receives is one of the biggest indicators of a good program.
5. Do
they walk the walk? Ask for examples of strength based practices, ask
for examples of success etc... Do not simply accept the words you are
being told, ask for instances when these theories became practice. Ask
how they approach challenging behaviors when the old PWS standbys did
not work. A good program should be able to easily provide these examples
for you.
6. Is the program nationally accredited? Have standards of
care, best practices, educational excellence been rigorously evaluated
by a recognized program? This is an indication that the program is
reaching beyond minimum requirements and striving to meet higher
standards for the individuals they support.
No matter what
program you choose be sure to allow for an adjustment period where
everyone is getting to know each other. It typically takes one year to
adjust and that adjustment is almost always harder on family members
than it is in the person with PWS. Keep open lines of communication and a
very open mind. It is not unusual for challenging behaviors to increase
before they get better. Stay involved as an active member of the team
and be open to new ideas and practices. Always remember that we are all
working towards to same goal- for your child to be the best person they
can be.
Submitted by:
Patrice Carroll
Manager PWS Services
You Should Also Read:
Top Ten Reasons Latham Excels in PWS Residential Placement