Introduction

Seizure Disorder

Multiple Disability

Sensory Disability

Spina Bifida

Syndrome Disorders and Rare Conditions

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If you think back to the categories of disability listed in the Individuals with Disabilities Education Act, you will recall two “catch-all” categories, multiple disability and deafblindness.  These are related.  The combination of vision impairment with hearing impairment is obviously a multiple disability.  However, the special communication issues presented by “dual sensory impaired” individuals led Congress to make them a separate category.  As you will see below, this has lead to series of specialized programs being set up for this small but hard to serve population. 

In most schools in Kentucky, a significant number of students with whom you will are working as a peer tutor are identified as having multiple disabilities.  Most frequently, these will be individual identified as having an intellectual disability and some other disabling condition.  This will include students with the most extensive needs, such as physical disability, specialized health needs, and intellectual disability.  It is very easy to be overwhelmed by people with complex needs for personal assistance and specialized services.  What you need to bring away from this topic is an understanding that the need for this level of support does not change the basic human equation.  We all are more the same than we are different.  With some people, we need to work a little harder to make a connection and to understand. 

As with many of the topics, there is a great deal of information available.  However, as in other topics the first five sites should give you the essential information needed to complete you notebook entry.  Do not let that stop you from taking some time to look at some of the additional sites and building your understanding.

1. Severe and/or Multiple Disabilities Fact Sheet  NICHCY fact sheet on severe and multiple disabilities.
2. The Student with Multiple Disability is a chapter from Creating Opportunities for Students with Intellectual or Multiple Disabilities, a document from the Saskatchewan Department of Education.  This 2001 manual is a resource to assist with educating students with intensive educational needs.  This chapter summarizes who this group of students is and the many issue related to meeting their needs.   It is long, but presented in aform that will make it easy for you to review it.  It contains some material that is already covered in the discussion of other conditions but, remember it all remains relevant to students with multiple disabilities.

3.      TASH is an international association of people with disabilities, their family members, other advocates, and professionals fighting for a society in which inclusion of all people in all aspects of society is the norm.  The name of the organization requires some explanation.

When TASH was started in 1974, it was called the American Association for the Education of the Severely / Profoundly Handicapped and went by the acronym: AAESPH.  In 1980 the name was changed to The Association for the Severely Handicapped, reflecting TASH's broader mission.  The name was changed to The Association for Persons with Severe Handicaps in 1983 but the acronym, TASH, continued to be used.  In 1995, the Board voted to maintain the acronym because it was so widely recognized but to stop using the full name of the organization, as it did not reflect current values and directions.  Probably the best answer to the question: "What does TASH stand for?" is Equity, Diversity, Social Justice and Inclusion!  

Explore this site a bit, but be sure to review “resolutions” to see what this group is about.  Under “values,” the resolution “Who TASH advocates for” has been used as the basis for a working definition of “severe” disability.

4. Information about Multiple Disability and Deafblindness  This web page from the Royal Institute for Deaf and Blind Children in Australia provides a very systematic overview of multiple disability and deafblindness. Each of the discussions provide a definition and examination of causes and a summary of effective intervention.  See the links in the upper right section of the page to move between categories, then click on the tabs to move through the topics.  Note that while the site is located in Australia, most of the information is from sources in the United States.

5.      Success Stories and Horror stories from SpecialChild.com.  This website features stories contributed by parents of children with a variety of disabilities. Updated regularly, parents can add their personal stories by e-mailing SuccessStory@specialchild.com.

Additional Resources on Multiple Disabilities

• Tips from Specialkids.com provide some sense of the various factors that must be considered by parents of children with complex needs.  Each of the links give a list of suggestions that parents have generated to deal with these day-to-day events.
• Strategies   for meeting the educational needs of students with multiple severe/profound physical and cognitive disabilities. A team, consisting of a teacher, occupational therapist, physiotherapist, and speech-language pathologist provide support through a variety of services.
• Ashley's Mom, Inc. In keeping with the spirit of the "mother of invention” this site was "born" out of necessity for finding creative ways to provide meaningful education for children with multiple disabilities.
• "Our Rays of Sunshine”  On the following pages you will find the stories of some of our children: For all of us our children are shining lights in our lives. Most of us are our children's prime advocates and voices.  Many of the medical community still do not think our kids are "worth" caring for or saving.   We have all worked hard to prove them wrong, and to find Doctors and medical staff who value our children.  Now, through this web site we are able to publicly acknowledge their accomplishments.
• Our-Kids list consist of people representing children of varying diagnosis; everything from indefinite developmental delays and sensory integration problems, to cerebral palsy, to rare genetic disorders. Over 35 countries are represented on the list now.  Ashley formed our-Kids in January 1993, on behalf of her son Austin who has Angelman Syndrome.