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Entering the Adult Residential Service System
September 21, 2009
Entering the Adult Residential Service System: Helping Parents and Advocates Adjust to Their New Role
By Steve Muller
Many parents learn how to advocate for their child with autism, working to acquire necessary supports from schools and other resources. Parents experience a new role as their typically developing children enter into adulthood. The same is true for parents of children with autism entering into the adult service system. There are new roles for everyone to learn.
If the adult is fortunate enough to live in a community that supports people with autism, they will be most likely be living in a setting with at least one other person with a developmental disability. Economics are a powerful force, and limited government resources are spread thin; therefore, most adults find they must share housing to qualify for publicly funded staff supports and to afford typical housing costs. There are other benefits of finding good room-mates since many hands make light work and the chores of household living can be shared. Living with others also provides important opportunities for socialization.
The Challenges of Shared Housing
The individual or in some cases his or her family advocate quickly finds that this new living arrangement presents a unique set of challenges. Many questions need to be answered when more than one person occupies a home, such as:
•· Who supplies what furniture and how will damage to the apartment or furniture be handled?
•· How warm or cold should the thermostat be set?
•· How are utilities to be paid, and in whose name?
•· How does each interdisciplinary team address undesirable behaviors?
•· What visitors should be allowed?
•· What limitations if any are placed on opposite sex visitors?
•· What are appropriate visitation hours?
•· Which hours are staff needed in the home?
•· Which groceries are purchased and shared?
•· How is meal preparation handled?
•· How is the television shared?
•· What is the minimum standard of cleanliness?
•· How are the housekeeping duties shared?
•· What community outings are attended?
•· How are housing expenses handled during long absences or hospitalizations?
•· Where are medications stored and who has access?
•· When is a room-mate required to leave the residence, and under what conditions?
•· How are expenses managed if a person leaves the residence?
When an adult rents an apartment or home, he/she is required to sign a lease stating that the adult is legally responsible for and entitled to occupy the residence. Usually this lease is signed by every adult occupying the residence. For many adults with autism the landlord is someone other than the service provider.
When one of the room-mates wants to end the agreement, the occupants may find they are all legally bound to the residence. It isn't as easy as telling one of the house-mates they must go. Unfortunately, this is a common misperception among family advocates who may lobby that one of the house-mates should leave. Individuals or their advocates may wrongly assume that the provider can simply discharge someone from the residence. However, a provider often has very limited input into which individual(s) continues to reside in the residence. This possibility should be considered carefully when evaluating room-mate choices.
Issues to Consider When Choosing Room-mates
Each individual and in some cases the family advocates are encouraged to work through these questions early in the game. Some adults may be limited to whatever vacancy is available. Others are more fortunate and have multiple options for housemates. In these circumstances, many providers will facilitate opportunities for possible room-mates and key family members to meet and get acquainted. Everyone may be looking for something different from this meeting. Some questions to consider include:
•· Is the pairing a good social connection? The parties need not become best friends, but can they reasonably tolerate the other's interests or eccentricities?
•· Do the skills of each party complement one another? Will one person's demand for cleanliness be difficult for another?
•· Will their interests complement each other? Staffing limitations may require that everyone attend or no one attend a specific event. Can attendance at community events be successfully negotiated?
•· What procedures are in place for resolving conflict among the individuals living in the apartment? Each individual and possibly their family advocate should consider working through the questions above before entering into a lease agreement.
Housing relationships don't always work out, even when the parties don't have a developmental disability. Check with any parent of a typical child and you will hear horror stories about failed housing arrangements. These troubles can be amplified when one or more of the house-mates struggle with autism.
As a child ages into adulthood, the role of the parent is equally important but must undergo a shift. This change is difficult but necessary. With the proper supports, good planning, and flexible and creative problem solving, we can all improve our ability to support these individuals, thereby increasing their chance of success.
About the Author
Steve Muller is the executive director of The Homestead, in Pleasant Hill, Iowa, which through their campus and community services, seeks to enrich the lives of people with autism through work, play and community. For more information, visit www.thehomestead.org.
About The Homestead
The Homestead is a private, non-profit organization that provides innovative solutions for children and adults with autism, their families and allied professionals. Services are provided in the community, in homes and in a unique agriculture based campus program. Autism is a neurological disorder that severely hinders the way information is gathered and processed causing problems in communication, learning and social skills. It occurs in roughly 1 of every 150 births.
For more information, contact
Steve Muller
Executive Director
1625 Adventureland Dr., Suite B
Altoona, IA 50009
p515.967.4369
f888.228.8476
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