Spruce Point Blog

Future planning for an adult with special needs is a complex. For individuals with intellectual disabilities or neurodevelopmental disorders such as autism or Asperger’s Syndrome, planning for their future needs as they age is critical. Planning for the future is also important for your own peace of mind and that of other family members.

 

While researching living and housing options for adults with autism, Asperger’s Syndrome and other developmental delays, I was startled by the lack of articles, investigative literature, and information on the subject.  Just recently, I have encountered coalitions, family groups and others discussing the subject. Eventually, I found a few articles, but they were difficult to find. The articles and papers I did find were in scholarly journals not readily available to those without access or subscriptions to academic type journals.

 

The topic of residential options for adults with disabilities can be overwhelming. There are many factors to consider when planning the future of the adult child with special needs.

 

So where does one start? First by acknowledging that future planning is a process. The future plan will include some kind of timeline, a list of people to assist you and questions to ask along the way. It is important to mention that each family’s situation is unique and each family will have their own set of plans that will work best for them. What is important is that you begin to think about it and then take incremental steps to creating a plan.

 

Below are a few resources for families. 

Resources:

 

The Special Needs Planning Guide: How to Prepare for Every Stage of Your Child’s Life by John W. Nadworny, CFP, ChFC and Cynthia R. Haddad, CFP. The pdf below provides a detailed description.

http://www.mfofc.org/news/2007nadwornyhaddad.pdf

 

Slides for download that will assist families to start thinking about future planning.

http://www.massfamilyvoices.org/financial%20planning%20call%20info.pdf

 

Published in June, 2009 provides a basic outline.

http://www.fema.gov/plan/prepare/specialplans.shtm

 

Kiplinger’s Ask Kim Web Column, Estate Planning for Special-Needs Children. Article posted on January 2, 2001.

There are countless treatment options for Autism Spectrum Disorder (ASD). The choices range from dietary regimens to behavioral therapies, all offering the promise of alleviating symptoms or providing some kind of cure. The reality is that families, educators, and service providers are bombarded with a large amount of therapy choices that can be confusing, complicated and even contradictory at times.

 

Recently, the National Autism Center published their National Standards Project. The report addresses the information overload surrounding treatments available for individuals with ASD. The project report is a guide to evidence-based practices for ASD treatments. In this report, the National Autism Center provides an extensive overview of the project that explains how the expert panelists approached and arrived at their inclusions of particular therapies. They reviewed established treatments, emerging treatments and unestablished treatments. The report also offers recommendations for treatment selection and evidence-based practices. Finally the report discuses the future direction of ASD treatment options and provides a frequently asked question section.

 

Choosing the best treatment for an individual with Autism Spectrum Disorder considers the uniqueness of that individual and their particular needs. Each child, adolescent and adult is different. What works well for one may not necessarily work for another. Often

times more than one therapy can be employed. Deciding what to do is not always black and white.  The National Standards Project report offers us a guide to evidence-based practices in a form that is understandable; Information that we can review and discuss with our service providers.

To download or order a hard copy of the National Standards Project visit www.nationalautismcenter.org and click on the Project link.

Evidence-based practices are treatment options that have been studied over time and have been shown to support an expected outcome. In other words, evidence-based practices offer scientific evidence that the treatment indeed treats the condition. To some this may sound like a no-brainer, but for others it is a whole new idea on how to think about making a health care decision.  Knowing what has a likelihood of working for a particular condition is important.
 
It can be stressful when we are placed in the driver's seat to make a decision about a course of treatment for a loved one or a consumer. It can sometimes be scary when we are about to spend dollars in hopes to achieve a positive outcome, a treatment that could finally works. Evaluating are choices based on evidence can ease the stress and the fear of making the right choice.

Reviewing evidence-based practices help us to evaluate among  list of treatment options. Evidence-based treatment means it's been tested and the practice or treatment has been shown to offer the outcomes in the direction we want. Sometimes this may not be the case. We do not get our desired result. We should still feel good about our choices. We did our homework and reviewed our choices based on what others found before us. Chances are there are other treatment options in the toolbox for us to try.

The next time you hear or read about evidence-based practice, you will know that the treatment option was created by following a particular method and that the researchers documented the procedures to achieve particular results. You will understand that researchers documented, measured and explained their findings in an orderly way so that others could achieve similar results.

Now parents and clinicians have a resource for best evidence-based practices for children and adults with autism spectrum disorder. The National Autism Center published a comprehensive list of treatments along with descriptions of autism treatment options. To read or download the report visit www.nationalautismcenter.com.

IAN is a research oriented Web Site created by Kennedy Krieger Institute, Baltimore, with funding from Autism Speaks. In April 2009, IAN opened a new research topic for adults. You can visit www.ianproject.com for more details.

Spruce Point is a residential option for persons with Autism, Asperger’s Syndrome and other developmental delays. We are a service provider of support services that encourages self-determination, self-respect and socialization opportunities within communities. Our mission is to assist adults with Autism, Asperger’s Syndrome and other developmental delays and their families to plan, locate, acess and coordinate community supports. For more information about our service visit www.sprucepoint.org.

The purpose of this blog is to reach out to adults with autism, Asperger’s Syndrome and developmental delays, their families, health care professionals, educational consultants, and others interested in discussing the topic of  services and residential choices for adults.

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