Advocates provides not only a home, but also a safe and supportive environment for adults with Prader-Willli Syndrome. Supervised around the clock by staff members specifically trained to respond to the demands and unique needs of people with Prader-Willi Syndrome, Advocates residential programs foster a strong sense of inclusion, hope and control.

We see each person with Prader-Willi syndrome as an individual with his or her own hopes, dreams, and life goals. We recognize and provide the many environmental modifications and restrictions PraderWilli requires, while offering a person-first approach to community living.

Our residents enjoy a life of appropriate vocational, social and leisure activities, in an environment where meal plans are designed by a registered dietician to meet each individual's unique health needs. Routines are in place to diminish and control food anxieties, and daily caloric intake and exercise regimens are closely monitored.

In an Advocates residence, adults with Prader-Willi syndrome learn the skills necessary to live as fully and independently as possible. Safety is maintained at all items within a home that promotes an opportunity for self awareness, growth and achievements.

Accomplishments

Many of our residents have achieved tremendous success in their individual weight loss plans since moving into the group home setting, where kitchens are locked and individuals are closely monitored on site and when out in the community.

Most have experienced a drastic reduction in emergency room visits and the duration of hospitals stays. Incidents of skin picking have been successfully brought under control for a number of clients with the introduction of sensory stimulation exercises. Behavioral situations are immediately addressed and controlled.

Advocates is a member of the national Prader-Willi Syndrome Association Care Provider Advisory Board, and our residential programs for persons diagnosed with Prader-Willi Syndrome have been nationally recognized.

Neighborhood Living

In siting and staffing group residences for those with Prader-Willi syndrome, Advocates' goal is to create an environment of inclusion. Our homes are located in residential neighborhoods, most within the same geography in order to allow our clients convenient interaction with their peers in other residences. This siting also allows us to meet staffing needs at all times, to ensure the most appropriate coverage and quickly address all situations.

As members of the community, our clients develop a strong sense of belonging, and take a real interest in the world around them. We encourage them to pursue their individual goals and to take advantage of the numerous life-enhancing opportunities available to them.

Success Stories

Advocates' program for people with Prader-Willi Syndrome has many success stories, from extreme weight loss to the cessation of skin picking. Positive behavior management and structured support systems create a safe and nurturing environment that provides opportunities for a rewarding, full life experience for our residents. Rules and limits are established and firmly enforced, with the goals of individual freedoms and independence always a guiding principle.

The mission of the Prader-Willi homes of Advocates is to provide adults with Prader-Willi Syndrome a caring home in which they can live safely and as independently as possible. We are proud of our track record of success.

Activities

Weekday activities include day habilitation programs run by Advocates and partner organizations in the community, where clients can pursue their interests in a setting that recognizes their potential and their needs. Residents of Advocates' Prader-Willi programs are also invited and encouraged to participate in Advocates' many expressive arts workshops, including the creative arts and music,and are always considered as members of the broader Advocates' family.

Through development of social skills including behavioral management, clients with Prader-Willi Syndrome enjoy an active social life, with supervised outings to theater and sporting events and shared activities, particularly with the residents of our other Prader-Willi program sites. Many clients visit frequently with their own family members, enjoying holidays and special occasions with loved ones, returning with a renewed sense of self-worth, belonging and community. Friends and family members are always welcome to visit.

Staff Care and Support

Each of the residences in our Prader-Willi program is home for up to five clients, each of whom has his or her own room. The resident staff member has the ongoing support of up to three additional staffers. All staff are formally trained, and receive continual, ongoing training, as well, resulting in low turnover.

Residents in Advocates' Prader-Willi programs develop close and lasting relationships with their housemates and staff personnel, who quickly become their extended family. Residents are provided with around-the-clock supervision, and transportation in the house van to and from day habilitation, medical appointments, and social and community events. Clients and staff alike also enjoy scheduled one-one time out in the community in a weekly basis.

Advocates' relationships with community health care providers ensure that individuals receive the best health care available to them. Residents able to attend to their own medications needs are encouraged to do so, after clear and explicit training by staff. Behavioral needs are met by trained clinicians and mental health professions.

Responsibilities

Residents in Advocates' Prader-Willi programs share a common pride in the houses they call home. They take responsibility, with assistance from staff, for not only their own room and laundry, but also contribute to the everyday upkeep and appearance of the residence by performing routine chores on a daily a basis. Advocates complements their efforts with routine site maintenance that meets high standards for safety, comfort and overall appearance.
Each home features exercise equipment that is appropriate for each individual living in the home.

Funding

Advocates' residential program for individuals with Prader-Willi Syndrome is supported by funding from the Massachusetts Department of Developmental Services and other government agencies including out- of -state agencies. Families may also make direct payment to cover programs and services provided.

Private grants and donations from families, individuals, and businesses support activities for those in the program. These contributions greatly enhance the quality of life for our clients.

A brief explanation of Prader-Willi syndrome (PWS)

PWS is a complex genetic disorder that includes short stature, mental retardation or learning disabilities. Incomplete sexual development, characteristic behavior problems, low muscle tone, and involuntary urge to eat constantly, which, coupled with a reduced need for calories, leads to obesity. PWS is found in people of both sexes and all races.

People with PWS have a flaw in the part of their brain (the hypothalamus) that determines hunger and satiety (fullness). These people never feel full enough, so they have a continuous urge to eat. To compound this problem, people with PWS need considerably fewer calories than normal to maintain an appropriate weight. The obesity that results is the major cause of illness and death in this disorder. As in the general population, obesity in PWS can cause high blood pressure, respiratory difficulties, diabetes and other problems.

People with PWS need a lot of help. In community, work and residential settings, they often need special assistance to learn and carry out responsibilities and to get along with others. In all settings, people with PWS need around-the-clock food supervision. Most affected adults with PWS do best in a special group home, where food access can be restricted without interfering with those who do not need such restrictions. Although in the past many died in adolescence or young adulthood, it is thought that prevention of obesity will allow a person with PWS to live a normal lifespan.

Reprinted with permission from the Prader-Willi Syndrome Association (USA)
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Advocates Inc., One Clarks Hill, Suite 305, Framingham, MA 01702
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Supporting you, your loved ones, your friends, Your neighbors...

 
Advocates provides support services for people with:
  • Mental illness or co-occurring mental illness and substance abuse
  • Intellectual or developmental disabilities or co-occurring mental illness and developmental disability
  • Prader-Willi Syndrome
  • Autism and pervasive developmental disabilities
  • Acquired or traumatic brain injury
 
We also provide support services for:
  • Deaf adults with mental illness or a developmental disability
  • Families who are supporting a family member with a disability
  • Elders living in the community who may have a mental illness or substance abuse disorder
  • Adults with a mental health diagnosis in jail or re-entering the community
  • Youth in transition from foster care
  • Individuals and families who are homeless or at risk for homelessness

 

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