Multiple Disabilities

NICHCY Disability Fact Sheet #10 August 2013

Sharon’s Story Now in preschool, Sharon’s parents know Sharon receives special that Sharon will always need Sharon is an active five education services. Like early some support because of her year old who loves to spend intervention, these services multiple disabilities. But her time with her grandmother. are meant to address her parents also know how She also loves to fingerpaint special learning needs. Her determined Sharon can be and play with the family dog. parents are very involved. when she’s learning some- Sharon has multiple disabili- They sit down often with the thing new. She’s going to ties. When she was born, she preschool staff and talk about learn it, by golly, there’s no didn’t get enough oxygen. Sharon’s progress. The team stopping her. As a result, she has an also talks about Sharon’s intellectual disability, challenges and how to Causes of Multiple problems with mobility, and address them. Last week, for Disabilities a speech impairment that example, Sharon got a makes it hard to understand picture board to help her Having multiple disabili- what she’s saying. That communicate. She’s busy ties means that a person has doesn’t stop Sharon from learning to use it. more than one disability. chattering, though. She has What caused the disabilities? a lot to say. Often, no one knows.

For Sharon’s parents, With some children, it’s been a long road from however, the cause is known. Sharon’s birth to today. For example, Sharon’s When she was just a baby, disabilities were caused by a she began receiving special is the lack of oxygen at birth. Other services called early National Dissemination Center causes can include: intervention. These services for Children with Disabilities. help children with • Chromosomal disabilities from birth to NICHCY abnormalities their third birthday. In 1825 Connecticut Avenue N.W. early intervention, Sharon Washington, DC 20009 • Premature birth learned to crawl and to 1.800.695.0285 (Voice / TTY) • Difficulties after birth stand and—finally!—to 202.884.8200 (Voice / TTY) walk with braces. [email protected] http://nichcy.org

Disability Fact Sheet #10 (FS10) • Poor development of the brain or spinal Have you recently learned that cord Have you recently learned that your child has multiple disabilities? • Infections If so, you may find it helpful to read two • Genetic disorders articles on our website:

• Injuries from accidents1 New to disability? http://nichcy.org/families-community/ Whatever the cause, the result is that the new-to-disability child has multiple disabilities. Fortunately, there’s help available. Keep reading to find out You are not alone more. http://nichcy.org/families-community/ notalone/ Multiple Disabilities Aren’t All the Same The answer will help parents and involved The term multiple disabilities is general and professionals decide what types of supports broad. From the term, you can’t tell: and services the child needs now and in the future. • how many disabilities a child has;

• which disabilities are involved; or Help for Children with Multiple Disabilities • how severe each disability is. When children have multiple disabilities, Many combinations of disabilities are they are often eligible for the type of help that possible. For example, one child with multiple Sharon, our story girl, is receiving. In fact, more disabilities may have an intellectual disability than 8,000 children in preschool (ages 3-5) and deafness. Another child may have cerebral received special education and related services palsy and autism. Sharon, above, had three in the U.S. in the Fall of 2011 because of their different disabilities. All have multiple disabili- multiple disabilities.2 More than 125,000 ties—but oh, such different ones! school-aged children did, too.3

To support, parent, or educate a child with For babies and toddlers | When a baby is multiple disabilities, it’s important to know: born with multiple disabilities, his or her parents should know that there’s a lot of help • which individual disabilities are involved; available—and immediately. Shortly after the • how severe (or moderate or mild) each diagnosis of multiple disabilities is made, disability is; and parents will want to get in touch with the early intervention system in their community. We’ll • how each disability can affect learning and tell you how in a moment. daily living. Early intervention is a system of services The different disabilities will also have a that helps infants and toddlers with disabilities combined impact. That’s why it’s also important (until their 3rd birthday) and their families. to ask: How does the combination of these Early intervention services are available in every disabilities affect the child’s learning, balance, state and territory, as required by the use of the senses, thinking, and so on? Individuals with Disabilities Education Act (IDEA). These services may be provided on a sliding-fee basis. This means that the costs to the family will depend upon their income.

NICHCY: http://nichcy.org 2 Multiple Disabilities (FS10) • To access early intervention services such severe educational needs in your area, consult NICHCY’s that they cannot be accommo- State Organizations page, online dated in a special education at: http://nichcy.org/state- program solely for one of the organization-search-by-state impairments. The term does not include deaf-blindness. There, select your state. Then [§300.8(c)(7)] use the drop-down menu to select “State Agencies.” You’ll As you can see, there’s more to get a list of State Agencies in IDEA’s definition of multiple your state. Look for the title disabilities than having more than “Early Intervention.” The agency one impairment or disability. A key listed beneath will be able to put you in part of the definition is that the combination of contact with the early intervention program disabilities causes the student to have severe in your community. educational needs. In fact, those educational needs must be severe enough that they cannot • To learn more about early intervention, visit be addressed by providing special education NICHCY at: services for only one of the impairments. http://nichcy.org/babies/overview/ The federal definition of multiple For children in school | IDEA also requires disabilities gives two examples of possible that special education and related services be combinations of disabilities: made available to every eligible child with multiple disabilities. This includes preschoolers • intellectual disability and blindness; and (ages 3-21). These services are specially designed to address the child’s individual needs • intellectual disability and orthopedic associated with the disabilities. The services are impairment. provided at no cost to families. But these are just examples. A child may • To access special education services for a have another combination of disabilities that school-aged child with multiple disabilities, causes severe educational needs—cerebral palsy get in touch with your local school system. and autism, for example, or blindness and an Calling the elementary school in your emotional disturbance. Whatever the combina- neighborhood is an excellent place to start. tion is, a child served under IDEA’s category of “multiple disabilities” will have a special • To learn more about special education (and education program that is designed to address there’s a lot to know!), visit NICHCY. Find the educational needs that arise from all of the our special education information at: child’s disabilities, not just one. http://nichcy.org/schoolage/ Note that IDEA does not include deaf- IDEA’s Definition blindness as an example of multiple disabili- ties. That’s because deaf-blindness is defined Speaking of IDEA, this very important separately and is a disability category of its own federal law defines the term multiple disabilities. under IDEA.

Multiple disabilities… Beyond the Federal Definition …means concomitant [simultaneous] impairments (such as intellectual So, what level of educational need is disability-blindness, intellectual considered “severe enough” to make a student disability-orthopedic impairment, with multiple disabilities eligible for special etc.), the combination of which causes education? Each state defines this for itself. So

NICHCY: http://nichcy.org 3 Multiple Disabilities (FS10) it’s important to know your state’s definition of Supporting Children with multiple disabilities. It’s also important to Multiple Disabilities know: Most children with multiple disabilities will •how each disability affects the child’s need some level of help and support through- learning and functioning, and out their lives. How much support a child needs • how the combination of disabilities does as will depend on the disabilities involved. A well. child with mild multiple disabilities may only need intermittent support (mean- NICHCY offers many fact sheets ing, support is needed every now on disabilities. To learn more and again, or for particular about specific disabilities, visit tasks). Children with multiple, our Fact Sheets page, at: more severe disabilities are http://nichcy.org/disability/ likely to need ongoing support. specific Support in major life activities Bear in mind that it’s hard | When considering what to say how a combination of supports a child needs, it’s helpful specific disabilities will affect to think about major life activities. an individual child. That will “Major life activities” include depend on the disabilities activities such as: involved and their severity. • caring for oneself; The Evaluation Process • performing manual tasks; An in-depth evaluation of the child must be • seeing, hearing, eating, and sleeping; conducted (with parental consent) before any services or supports may be provided under • walking, standing, lifting, and bending; IDEA. This evaluation is free of charge to families. Its purpose is to gather detailed • speaking and communicating; information about: • breathing; • the nature and extent of the child’s disabilities; and • learning;

• the educational or developmental needs • reading; resulting from those disabilities. • concentrating and thinking; and With information from the evaluation, 4 parents and involved professionals can then • working. work together to decide what services and Are any of these major life activities a supports the child will receive, given his or her challenge for the child because of his or her individual needs. disabilities? Five-year-old Sharon has difficul- This is a very brief overview of the ties with caring for herself, walking, standing, evaluation process under IDEA. To learn more and communicating. Her intellectual disability about this vital step, visit NICHCY’s discussion makes learning, reading, concentrating, and at: http://nichcy.org/schoolage/evaluation thinking a challenge. Not surprisingly, these are the areas where Sharon needs extensive support. Only time will tell how much support she’ll need as she grows older.

NICHCY: http://nichcy.org 4 Multiple Disabilities (FS10) Tips for Parents with multiple disabilities. Without AT, there may be many tasks they simply Learn about each of your child’s cannot do or will have difficulty disabilities. The more you know, doing. Computers, augmentative/ the more you can help yourself and alternative communication systems, your child. To identify organizations communication boards, head sticks, that specialize in each of your and adaptive switches are just some child’s disabilities, visit NICHCY’s examples of helpful AT. Visit the Family National Organizations Gateway, at: Center on Technology and Disability to http://nichcy.org/org-gateway learn more about which AT devices may be useful to your child: Love and play with your child. Treat your http://www.fctd.info son or daughter as you would a child without disabilities. Take your child places, read Practice and reinforce. Do your child’s together, have fun. disabilities affect his or her intellectual func- tioning? If so, he or she will be slower to learn Know your child’s needs, play to his or new things and will have difficulty applying her strengths. Each child with multiple that learning in new situations. Be concrete. disabilities has learning needs, yes, but each Give lots of hands-on opportunities for learn- also has his or her own set of skills, strengths, ing and practice. Give feedback immediately. interests, enthusiasms, and preferences. These Repeat the learning task in different settings. can be used to motivate your child and enrich learning, growth, and individuality. Give your child chores. Keep in mind his or her age, mental capacity, attention span, and Don’t let the labels get you down. What abilities. If necessary, divide tasks into small terms should you use to describe your child’s steps. Explain what your child is supposed to disabilities? There may be many to choose from do, step by step, until the chore is done. (e.g., delay, developmental disability, cerebral Demonstrate. Offer help when it’s needed and palsy, physical disability, speech or language praise when things go well. disorder, multiple disabilities), and each one describes a different aspect of your child. Learn Find out what your child is learning at to understand and be comfortable with using school. Look for ways to apply it at home. For each one. This will help you be an advocate for example, if the teacher is reviewing concepts of your child and his or her unique gifts and money, take your child to the supermarket with challenges. you to help keep track of what money you’re spending. Encourage your child to be independent. For example, help your son or daughter learn Look for social opportunities in the self-care skills such as getting dressed, groom- community (such as Scouts) or activities ing, and doing laundry. offered through the department of sports and leisure. Joining in and taking part will help Team with the professionals working with your child develop social skills and have fun. your child. As a parent, you have the right to participate in team meetings where your child’s Talk with other parents whose children education or program is being planned. Be have disabilities—especially those who have there. Share your unique knowledge of who one or more of the same disabilities as your your son or daughter is; advocate that the child. Other parents can be a fountain of program address your child’s needs. practical advice and emotional support. Visit the websites of the disability organizations Investigate assistive technology (AT). AT is you’ve identified to see if they have a parent appropriate, even essential, for many children group nearby.

NICHCY: http://nichcy.org 5 Multiple Disabilities (FS10) You can also identify parent groups in your your class, chances are that he or she has an area by consulting NICHCY’s State Organiza- individualized education program (IEP). The tions page (see the box below). We also suggest IEP will spell out the educational and reading Parent Groups, available online at: functional goals to be worked on. You may http://nichcy.org/families-community/help/ have been part of the team that developed the parentgroups IEP. If not, it’s important to be familiar with what the student’s IEP requires. Ask for a copy. Be patient, be hopeful. Your child, like Consult with administrators and other teachers, every child, has a whole lifetime to learn and as needed, to make sure that the supports and grow. services listed in the IEP are provided.

Tips for Teachers Make modifications. Students with multiple disabilities often need substantial Know the needs, play to the strengths. modifications and accommodations in the Each student with multiple disabilities will classroom. This will help them access the have his or her own set of skills, strengths, and general education curriculum at a grade- learning needs. Learning more about each appropriate level. Find out about disability of the student will be helpful in accommodations at: addressing those learning needs. Also find out http://nichcy.org/schoolage/accommodations more about the student’s strengths and inter- ests, enthusiasms, and preferences. These can Let the IEP team know what program be used to motivate the student and enrich the supports or modifications you need. The education he or she receives. Parents are a great student’s IEP can include program modifica- source of this information. So is the student! tions and supports for school personnel. Read more about this at: http://nichcy.org/ Be familiar with the student’s IEP. If you schoolage/iep/iepcontents/modifications- have a student with multiple disabilities in personnel

Finding Organizations for Parents

There are many organizations in your state that can be especially helpful to parents of children with disabilities. Visit NICHCY’s State Organizations page to identify what’s available in your area. Go to: http://nichcy.org/state-organization-search-by-state

Select your state. From the drop-down menu, select “Organizations for Parents.” Submit your search. Results will include several key parent organizations, including:

• The Parent Training and Information Center (PTI) for your state and possibly the Community Parent Resource Center (CPRC). PTIs and CPRCs know the relevant resources in your state and community. They can also give you information about disabilities, the educational rights of your child, or strategies for being an effective advocate for your child.

• The Parent to Parent program in your state. The P2P program matches parents in one-on- one relationships for sharing information, experiences, and emotional and practical support.

Our State Lists will give you the address and contact information for the main state office of these organizations. Often, they also have local offices. So, even if the main office isn’t located nearby, check to see if there’s a satellite office in your area. Very often, there is!

NICHCY: http://nichcy.org 6 Multiple Disabilities (FS10) Allow partial participation, as necessary. physical therapy, or orientation and mobility Partial participation means that students with services. It’s best practice to provide these multiple disabilities aren’t excluded from services in the classroom during the natural activities because they might not be able to routine of the school, although some may be complete a task fully or independently. provided in other settings. Work with the Modifications can be made to the task itself or related services personnel, as appropriate. Learn to how students participate. more about the related services your student receives or may need at: http://nichcy.org/ Consider assistive technology (AT). AT is schoolage/iep/iepcontents/relatedservices/ appropriate, even essential, for many students with multiple disabilities. Without AT, there Address behavior issues. Behavior can be may be many tasks they simply cannot perform affected by having disabilities, especially a or will have difficulty performing. Computers, combination of disabilities. If a student’s augmentative/alternative communication behavior is affecting his or her learning or the systems, and communication boards are just learning of others, IDEA requires that behavior some examples of helpful AT. be addressed in the IEP. Is this a Visit the Family Center on problem area for your student? Technology and Disability to Learn what the law requires and learn more about which AT effective strategies for addressing devices may be useful to a behavior issues in our Behavior given student: Suite: http://nichcy.org/ http://www.fctd.info schoolage/behavior

Does the student need A paraprofessional in your textbooks in another format? classroom? Some students with IDEA requires that students with multiple disabilities will require the print disabilities be provided with support of an aide or paraprofes- accessible instructional materials. There are sional. If this is so for your student, it helps to many disabilities that affect a student’s ability know about working with paraprofessionals. to use print materials; does your student have NICHCY offers a Para page, which paraprofes- one such disability? If so, visit the National sionals may also find useful, at: AIM Center, to learn where and how to get http://nichcy.org/schools-administrators/paras textbooks and workbooks that your student will be able to use: http://aim.cast.org/ Encourage the student’s independence. It’s natural to want to help a student who’s Practice and reinforce. Do your student’s struggling to do a task single-handedly, disabilities affect his or her intellectual especially when you know there’s a disability functioning? If so, he or she will be slower to involved. But it’s important for the child to learn new things and will have difficulty apply- develop the skills it takes to live as indepen- ing that learning in new situations. Be concrete; dently as possible, now and in the future. give lots of hands-on opportunities for learning and practice. Give feedback immediately. When the time comes, support transition Repeat the learning task in different settings. planning. IDEA requires that IEP teams and students plan ahead for the student’s transition Support related services in the classroom. from school to the adult world. There’s a lot to Depending on the student’s disabilities, he or know about transition planning. When the she may need related services to benefit from time comes for the student to begin planning, special education. Related services may include have a look at our Transition Suite: speech-language therapy, occupational therapy, http://nichcy.org/schoolage/transitionadult

NICHCY: http://nichcy.org 7 Multiple Disabilities (FS10) Resources of More Information

Colorado Department of Education. (n.d.). Significant support needs. Denver, CO: Author. Online at: http://www.cde.state.co.us/cdesped/SSN.asp

Downing, J.E., & MacFarland, S. (2010). Education and individuals with severe disabilities: Promising practices. In J.H. Stone & Blouin, M. (Eds.), International Encyclopedia of Rehabilitation. Online at: http://cirrie.buffalo.edu/encyclopedia/en/article/114/

Hosken, C.K. (2008). Severe and multiple disabilities (Lecture #106). Retrieved December 19, 2012 from: http://www.agape-biblia.org/plugins/pract-ministries/Lect106.htm

Watson, S. (n.d.). Characteristics and background information for students with multiple disabilities. Retrieved January 4, 2013 from: http://specialed.about.com/od/multipledisabilities/a/multiple.htm

Organizations

National Center on Severe and Sensory Disabilities (NCSSD) | http://www.unco.edu/ncssd/

TASH | Advocates for inclusion for people with significant disabilities and support needs. http://tash.org/

Tots ‘n Tech Research Institute | Find out more about assistive technology for young children. http://tnt.asu.edu/

National Lekotek Center | Find toys and play activities for children with special needs. http://www.lekotek.org/

March of Dimes | http://www.marchofdimes.com/

References

1 Watson, S. (n.d.). Tips for working with students with severe handicaps: Severe handicaps in the inclusional setting. Retrieved January 4, 2013 from: http://specialed.about.com/od/physicaldisabilities/a/severe.htm

2 Data Accountability Center. (2012, August). Table B1-2. Number of children ages 3 through 5 served under IDEA, Part B, by disability and state: Fall 2011. Rockville, MD: Author. Online at: https://www.ideadata.org/TABLES35TH/B1-2.pdf

3 Data Accountability Center. (2012, August). Table B1-3. Number of students ages 6 through 21 served under IDEA, Part B, by disability and state: Fall 2011. Rockville, MD: Author. Online at: https://www.ideadata.org/TABLES35TH/B1-3.pdf

4 Federal law at 42 USC §12102 defines “major life activities” as follows: “major life activities include, but are not limited to, caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating, and working.”

NICHCY Disability Fact Sheet #10 August 2013

This publication is made possible through Cooperative Agreement #H326N110002 between FHI 360 and the Office of Special Education Programs, U.S. Department of Education. The contents of this document do not necessarily reflect the views or policies of the Department of Education, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government.