Autism Action Plan

There are some basic steps to create what our family calls an Autism Action Plan. The plan for our loved one is very similar to life planning or future planning. Life planning is essential for persons with developmental disabilities. Our family member will need help to plan for his lifetime care, supervision, protection and financial security.

"It is a tragedy when children and adults with autism are not able to fully participate in their communities because they cannot access the services that would allow them to do so. The more we learn about autism, the more hope we have for treatment and the more tragic inaction becomes..." Former Sen. Hillary Rodham Clinton (D-NY)

You have the power to change for the better any given situation.

How? Apply what you learn so that it best suits the needs and desires of your child -- and your family. Begin by thoughtfully asking and seeking answers to questions, like:

  • What are my child's unique needs and desires?
  • Are there any specialized services available for a child with autism in my state?
  • Which autism resources could be helpful in our situation?
  • How can I help my child to learn, grow and develop?
  • Should any health, safety or behavioral issues be addressed?
  • Are there any needs or concerns which require my immediate attention?

Consider all your options. Begin the process of putting together a continuous, flexible autism action plan into place for your loved one -- from early signs and symptoms of autism throughout preschool to adult services.

Our autism action plan helps us to identify:
  • the overall goal,
  • the specific steps necessary to reach the goal,
  • person(s) responsible for completing each step,
  • other resources or people to help, and
  • timelines for each step.

We have found the Letter of Intent Worksheet to be especially useful in creating an autism action plan.

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Ideas to help you create an
Autism Action Plan

The list of links below are to pages on this site sharing ideas, information, resources, supports and services, which may help you begin to develop a plan of action or autism action plan for your loved one. It is not intended to be complete, and will continuously grow as our own plan is flexible and changes from time to time.

Employee Benefits for Families of Children With Special Needs Information, research and resources to help you better understand the available employee benefits for families of children with special needs, so that parents can make more informed choices about both public and private health benefits and support programs.

Social Security Benefits Parent tips on applying for Social Security and Supplemental Security Income disability programs.

Family Journal A Family Journal is an empowering and useful document which explains to your family in plain language, information they should know about in your absence. This file, journal or document states exactly what your wishes are. In regards of your child with autism should something happen to their parent or guardian.

Letter of Intent A Letter of Intent is intended to describe the life of your loved one and express your hopes and wishes as parents and caregivers, particularly in the event of your death or inability to continue in the care giving role.

Letter of Intent Worksheet helps you to consider your son or daughter's future by listing options to use as a guide for future caregivers in decision making and interaction with your child. Draw upon what you know about your son or daughter, through observation and through discussion with your child, and share what you've learned.

Medicaid Waivers are actually Home and Community-Based Services Waivers provided by most states to persons with developmental disabilities or long-term illnesses to receive certain medical and non-medical services. These services may help a person at any age remain living at home or within their community instead of an institution or residential placement.

How to Select a Service Coordinator Useful information and questions to ask to help you select the right service coordinator for your loved one. A Service Coordinator or case manager assists a person with a developmental disability to develop an individualized plan of service or ISP.

Respite Services give families time away from taking care of their family member who has a disability. Respite allows family members to go shopping, attend a wedding or funeral, or to just relax and stay at home.

Suggestions and Tips to Recruit In-Home Respite Providers from where to look for staff… to salary.

Transition Planning Your child's school district Special Education Department or Committee is required by both federal and state regulations before age level 14 to begin to help you and your child develop a transition plan from school to life after school -- meeting with you, your child and community agencies to discuss what skills and knowledge your child will need as an adult.

Person-Centered Planning consists of service options that are based on the choices, strength, and needs of someone who has a developmental disability - rather than a set choice of options for services.

What Is A Supports Intensity Scale? Describes a planning tool designed to measure the level of support that each person with autism and other developmental disabilities need to fully participate in the community.

Self-Determination is the right of persons with disabilities to make choices about their own lives, to have the same rights and responsibilities as everyone else, and to speak and advocate for themselves.

Self-Advocacy. Parents are their children's best advocate. However, it is very important for able adults with autism and other developmental disabilities to learn how to advocate for themselves and become self-advocates. Learning to speak up for yourself is generally a process.

What is a Circle of Support? A circle of support is a group of people interested in getting together to assist a focal person enhance and expand his or her life by helping to reach key personal goals.

Residential Placement There are various types of residential placement options available for an individual with autism depending upon the level of care a person may need. This page also offers dozens of valid questions to help you select a residential service provider, as well as an agency interested in providing support and residential opportunity for your loved one.

What is Guardianship? A parent is considered by law, the natural guardian of his or her child until that child reaches the age of 18. Once the child reaches the age of 18, however, a parent or sibling (or other potential guardian) must petition the court to grant guardianship status over the said adult with disabilities.

Supplemental Needs Trust Individuals with mental retardation and/or developmental disabilities who have assets over approximately $2,000 are ineligible to receive state and federal services i.e. HCBS waivers and must spend their money down to this amount first. However, the government does allow "special needs trusts" to be set up for children with disabilities.


Autism Action Plan Resources

First 100 Day Kit

Autism Speaks has created a 100 Day Kit specifically for newly diagnosed families, to make the best possible use of the 100 days following the diagnosis of autism. The kit contains information and advice from trusted and respected experts on autism and parents of children with autism. There is a week by week plan for the next 100 days, organizational suggestions and forms that parents/caregivers can use to help with the paperwork and phone calls, as they begin to find services for their child.

Autism Aid

Autism Services (General Standard of Care Throughout Life)

For more information on creating an autism action plan for your loved one, visit The National Institute on Life Planning (NILP). Families can ask questions of professionals involved in life planning, and subscribe to their newsletter published regularly for tips and ideas. Useful books, i.e. Planning for the Future by Richard Fee, can also be purchased through the NILP.

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