Why Parents of Adults with Autism Need to Develop a Written Life Plan

A written life plan helps ensure your adult child’s needs are thoroughly understood by future caregivers.

Since none of us can be sure what the future holds, it is critically important for a parent of an adult on the autism spectrum to develop a written life plan for their loved one well before their adult child may need to leave the family home. A life plan helps parents answer the question, “What will happen to my child when I am gone or unable to care for him or her?” A life plan spells out in detail the personal needs and preferences of the individual with autism. It also lays out a parent’s intentions for future care of their adult-child throughout the life-span and clarifies financial and legal arrangements made on behalf of the person with autism. Life planning is a key component of the family training and autism education services offered through the Foundation for Autism Support and Training (FAST).


Why You Need to Develop a Life Plan for a Person with Autism

A parent of an adult with autism may wrongly assume that their other children or a sibling will take care of their adult child with autism, once they are gone. This arrangement is frequently unworkable.Many parents of adults with autism are so busy dealing with the day- to- day care of their loved ones, or are under so much stress dealing with the extreme demands of parenting, that they have not planned for their children’s futures. Some parents are not aware that life plans are needed and valuable, while others are confused about how to write a life plan or where to seek help.Many parents of adult children with autism believe they will continue to be the primary caretaker for the remainder of their loved one’s life. Such unrealistic and magical thinking does not consider the following possibilities:

· The fact that most adults on the autism spectrum outlive the parents;

· The adult with autism may develop behavior patterns that may create a serious, unanticipated crisis situation that would make it unsafe for the loved one to continue living at home;

· The parent may wrongly assume that other children will take care of their disabled sibling, not realizing that in reality, this plan would be unworkable or unrealistic;

· The extremely undesirable circumstance where the consumer with autism might become the caregiver to his own parent;

· The parent may erroneously assume that the government will take care of his loved one sufficiently or find quality group homes or quality residential facilities.

· Avoiding or delaying the process of life planning could eventually cause a loved one with autism to go through some very rough times in the future or end up in large residential facilities where the individual’s quality of life is greatly reduced.

· Some current financial benefits may be interrupted, which would affect the consumer’s quality of life. · New caregivers in group homes and residential facilities may have difficulty understanding the consumer’s actions, desires, preferences, communication patterns, etc., without written guidance.

· Without written details of a parent’s wishes and desires, future caregivers may unknowingly go against the parent’s wishes for their loved ones.

· Imagine how confused and upset the consumer would feel not knowing where his next meal is coming from or where he will sleep that night! If life planning is accomplished before a crisis erupts, parents can gradually plan for their adult child’s future, and managers and staff of small residential facilities, group homes, or supported housing options in the community can get to know the consumer’s need and behaviors, which will determine what type of residential setting and residential care will best address his or her emotional and therapeutic needs.

Life Planning Services can and should be a centerpiece of ancillary family training and autism education services offered by supported and alternative community housing providers and day program services providers and vendors. Recommendations and resources should also be provided to help families find experts in special needs law and financial planning.

If people reading this wish to contact you or ARCHway how can they do that?
People with autism, service providers or parents of individuals with autism who are wishing to undertake lifespan planning and planning for housing needs of their transitioning teens or adults with autism may contact ARCHway at www.myarchway.ning.com and join our social networking site to stay in close contact with us.

Also see our public service announcement on You Tube with Annie Potts called “A Perfect Storm” on developing community housing options for adults with autism http://www.youtube.com/watch?v=Jtdo6Zh4ok4

What goes in a Life Plan for Adults with Autism Spectrum Disorder?

What goes in a Life Plan for Adults with Autism Spectrum Disorder?

A life plan for an adult on the autism spectrum is a critical document developed on an ongoing basis that details a comprehensive plan for your loved one’s life.

A Life Plan should include a parent’s specific wishes and desires for their adult child’s future living arrangements throughout the lifespan.

The information in a Life Plan is then used by people who subsequently care for the adult with autism when the parent is no longer the primary caretaker.

The plan should be reviewed annually as the consumer ages and the family situation changes, and at least every three years to ensure that legal documents are still up to date;

The plan containes legal planning documents such as wills, special needs trusts, arrangements for guardianship and guidelines for establishing or maintaining state and federal benefits;

Financial planning in conjunction with legal planning that will safeguard SSI and Medicaid benefits, and inheritance;

Financial planning to ensure that the “extras” in life that families provide--cable TV, vacations, favorite books and CDs, favorite clothing styles--are continued;

Predictions of probable medical needs and desired interventions;

Residential needs and desired living environments such as alternative housing options, residential facilities, group homes, and supported living options in the community;

Details on the consumer’s likes, dislikes, preferences and unique personality features;

Instructions for final arrangements and burial plans;

Detailed choices a consumer may wish to make beyond basic food, housing and medical needs;

Specifics on how the consumer may have control over his/her life choices;

Assurances are detailed that someone the family knows and trusts will be watching over and advocating for their loved one;

The life plan may also provide a schedule or example of a typical day in the life of the consumer.

For further information of Lifespan Planning for people with ASD go to www.myarchway.org and go to the Lifeplanning menu choice.

For those interested in finding community housing options for adults with autism as part of life planning, go to www.myarchway.ning.com and join ARCHway. You will be invited to participate in free webinars in the near future on developing community housing options for adults with autism.

To see our public service announcement that has been seen by nearly 15 million people to date, go to You Tube and search the term "autism housing" or go to: http://www.youtube.com/watch?v=Jtdo6Zh4ok4

Karen Kaye-Beall, director of ARCHway-FAST