Lecture # 106:
Severe and Multiple Disabilities

copyright 2008 Cheryl K. Hosken, BSN, MS Psych.

Objectives:
1. The student will be able to define "severe and multiple" disabilities.
2. The student will understand strategies to use with persons who have these disabilities.

Defining Severe and Multiple Disabilities
It is difficult to define this term precisely because no one definition covers all the conditions that special educators and psychologists know about. Usually these students have mental retardation that is accompanied by other disabilities such as extensive physical disabilities and delayed language skills. Some of them, however, have normal intelligence even though their physical and language disabilities may mask it.

There are two major themes in this definition: the extent of the disability is beyond mild or moderate levels, and there are two or more disabilities occurring simultaneously. Most of the students served in programs for severe and multiple disabilities have severe mental retardation. Thus they need more support and teaching than those children who are not mentally retarded. We are going to read about Kasey and while doing so, keep in mind the following four dimensions and what type of support she needs -

LIFE DIMENSIONS

SUPPORT DIMENSIONS

Meditate Word By Word On These Verses:
I Cor. 12:14, 18.

Personal Example
Kasey Brown no longer starts her day in a special education classroom for students with severe and multiple disabilities. She and six other eighteen- to twenty-year-old students from the school/community-based program now begin their day at Montgomery County Community College.

Before going to work, Kasey eats breakfast with former high school friends. They have graduated and are now enrolled at the community college. Even though Kasey does not talk, she converses with her mother, sister and friends using her picture communication book, some sign language, gestures, and facial expressions.

After breakfast, Kasey rides the van to work at an elementary school, where she works from 10 A.M. until 2 P.M. everyday in the cafeteria. She always greets her co-workers, putting on her apron, gloves, and headscarf, then she starts preparing the fruit. Carefully and slowly, she scoops the canned fruit into little cups and places them on trays. Then she sets up the cafeteria serving line. This means that she restocks the silverware, trays, makes sure there are enough napkins and straws, and then she puts the cartons of milk out. Kasey cleans up her area, has a quick lunch and takes a deep breath before the lunchtime rush begins.

It is Kasey's responsibility to dish up the hot food. This is the hardest part for her; the kids come too fast. But if she makes a mistake, the kids don't seem to mind waiting. At first, the kids were a little afraid of Kasey. But now she is treated as part of the staff. It helped the kids when their teachers explained that Kasey and people with other disabilities, while different in some ways, are just people like anyone else.

After the rush, Kasey helps wash all the countertops, puts away the trays and silverware, and washes the pots and pans. Then the van picks her up and takes her to the community college. After her class, a school bus takes her to a community options center where she spends every afternoon with her boyfriend Adrian and other friends with disabilities. They go to the shopping mall, the game room, the movies, or the library. Her sister picks her up at 5 P.M. and they shop for some cosmetics and then usually eat dinner in a cafe. At home, Kasey may fix herself a sandwich if she hasn't eaten dinner. This is a skill she learned in her adaptive skills program at school. Afterwards, she helps her mother with household chores. Kasey clears the table and puts all the dishes in the sink to wash. She spends the rest of the evening listening to music on her headphones. Her mother believes Kasey could not live without music.

At the day's end, Kasey signs for help with a bath. Her mother or sister adjusts the water temperature, but Kasey does the rest. Then she is ready for bed and signs goodnight to her mother and sister.

Question:
1. From the descriptions above, what type of physical and adaptive skill support does Kasey need?
(Only one of the following answers is correct.)
a) intermittent
b) limited
c) pervasive
d) extensive

 

 

Describing Characteristics of These Disabilities
To find a single definition of severe and multiple disabilities is difficult, so is accurately describing all the characteristics of all people with those disabilities. In fact, it may be that the differences among persons with multiple disabilities are greater than the similarities. However, researchers have identified 5 categories of characteristics: intellectual functioning, adaptive behavior, physical development, health care needs, and communication.

Intellectual Functioning
Academic Skills - Most individuals with severe and multiple disabilities have severe impairment of intellectual functioning. Intellectual functions are measure by intelligence test scores. But for people with these types of disabilities traditional methods of measuring intelligence are inappropriate. The usual tests are not designed for them and evaluators lack experience in testing these students.

Level of Awarenness - Because these people are so diverse, their level of awareness can range from having a very short attention span to being unresponsive to people, noise, movement, touch, odors, and other stimuli in their environment. Those with the most extensive disabilities spend a large portion of their day sleeping, crying, or in stereotypical behavior. Yet, even for those with limited awareness, there are times when they are alert and interested in what is going on around them.

Adaptive Behaviors
Two of the ten categories of adaptive behaviors are especially relevant to the severely impaired.
Self-care Skills - The majority of these individuals can learn to care for their own needs. Their school and adult programs include instruction in such self-care skills as dressing, personal hygiene, toileting, feeding, and simple household chores. For example, Kasey spent many years learning self-care skills that she uses in everyday life and that help her to be accepted by others in society.

Social Skills - Usually these people do not have typical social interactions with others. Some are withdrawn and some can be unaware of what is happening around them. Kasey, however, is just the opposite. She is sometimes too outgoing and must be reminded not to approach strangers.

A common misunderstanding is that these people always exhibit inappropriate social interactions. In fact, teachers, family, and friends often describe ways in which they have give and take (reciprocal) relationships with persons who have severe and multiple disabilities. Teaching a person to interact with his peers is an essential component of participating in a community. Social skills often determine the success or failure of employment and independent living adjustment. Having opportunities to participate in community activities increases the likelihood that these people with develop the right social skills,

Question:
2. Most children with severe and multiple disabilities:
(One or more of the following answers may be correct.)
a) look different.
b) may have mental retardation.
c) have differing disabilities.

 

 

Physical Development
Delayed Motor Development - Persons with S/M disabilities usually have a significant delay in motor development. Their sensorimotor impairments result in abnormal muscle tone. For example, some children have underdeveloped muscle tone that results in inability to hold up their heads, sit, or walk. Kasey has the other extreme - increased muscle tension, which prevents her from using fine muscles in her hands to sew or paint.

Sensory Impairments - Hearing and vision impairments are common among persons with S/M disabilities. We can expect that 2 of every five persons from this group of disabilities will have blindness, deafness, or both. If the child has both impairments, he cannot receive clear and consistent information from either sensory organ. The child has a tendency to turn into himself and appears passive and unresponsive. They have a very difficult time initiating conversation and cannot easily respond. Their behavior is distinctly different due to these limitations.

Health Care Needs
For the child with S/M disabilities who has low muscle tone, there are frequent health problems. They may have colds because they cannot cough properly. Their care is more complicated since they may need to be fed by a stomach tube or empty the bladder through a catheter.

Communication Skills
Most of these people do not acquire speech and language skills. Being unable to speak does not mean that they cannot communicate. In fact, even the severely limited children communicate. The critical factor is that the caregiver has to interpret the particular student's communication correctly. For example, the communication may be very subtle and difficult to see. A child can communicate by turning his head, adjusting his body, making noises, or making eye contact with someone.

Kasey, who is more advanced, does not speak, but uses an augmentive device - her communication book that has about 30 pictures. She points to a certain picture in her book to communicate her basic needs, or she uses some sign language. In addition, there are computerized communication devices that expand ability to communicate.

Match these terms with the definitions below:
A. Communication skills - B. Delayed motor/muscle development - C. Health care - D. Level of awareness

3-1. little response when touched or spoken to:
A, B, C, D.

3-2. increased muscle tension:
A, B, C, D.

3-3. augmentive speech device:
A, B, C, D.

3-4. use of an inhaler to give medication:
A, B, C, D.

 

 

Causes of Severe and Multiple Disabilities
In nearly half of the children born with these disabilities, there is no identifiable cause. In the rest of the known cases, there are chromosomal abnormalities, developmental disorders of the brain, metabolic disorders, and negative prenatal environmental influences.

These disabilities are not all preventable. However, if there is a suspected problem, amniocentesis, ultrasound, and biopsy can be done to identify the disability. The ultimate goal of prenatal diagnosis is to identify and treat the developing child before or after birth. Prenatal surgery can be done for a problem such as hydrocelphaly so the brain of a baby is not damaged. Maternal education is a component of prevention as well. Good health habits for any young woman of child-bearing age are important.

To determine the presence of a disability, the pediatrician performs an Apgar score immediately after birth. The child is rated on heart rate, respiratory effort, muscle tone, gag reflex, and color. The scores are 0, 1, or 2 for each trait - 2 being optimal. If the newborn's score is 4 or less for all 5 traits, the child is at risk to have disabilities. The next step will be physical examinations looking for the cause for the disability, and the extent of the disabling conditions. The testing usually occurs over a period of several years to determine the extent of neurological impairments, sensory deficits, and motor involvement.

Determining Nature and Extent of Special Education and Related Services
It is important to identify those children with severe and multiple disabilities as soon after birth as possible. A multidisciplinary team will rely on the doctor's diagnosis and physical therapist, occupational therapist, and speech therapist. Oftentimes it is not possible to give these children a standard intelligence test because the test itself is not written for children with S/M disabilities. Behavior scales are also variable in their results and don't give enough information to set up an educational program for the baby or child.

Developmental Model Special Education
Traditionally, these children were evaluated by a developmental approach. The teacher assessed the student using standard developmental checklists. The teacher made the determination if the child lacked specified developmental skills. Then the teacher targeted the skill that the student could not perform and instructed the student through a series of sequences so that he developed these skills. This evaluation-teaching approach assumed that until a student acquires a particular skill, he cannot learn a higher-level skill. Thus, those teachers who follow the developmental approach assume that a child must crawl before he walks.

Several problems can occur when using this approach for students with S/M disabilities. First, they may not develop in the same "normal" sequence as children without disabilities. In fact, many of them never acquire certain developmental skills because of their physical limitations. Second, this approach assumes that the students have to possess certain behaviors before they can acquire other skills. Third, this approach emphasizes the form of the skill rather than its function. Students who fail the eye-hand coordination test may be required to put pegs in a separate holes to learn this skill. However, they could learn the same skill by putting silverware in separate compartments in a drawer, thus learning in a more practical way.

Ecological Model
The ecological approach differs from the developmental approach because it examines the environment where a student lives or will work. Then the specific activities and skills are identified to help the student be successful in that environment. There are five steps to the ecological approach:

  1. Identify the places in the community where the person will be: home (housework), workplace, recreation, and learning how to use transport.
  2. Identify current and future environments where the student might live and work within these four places - for example, neighborhood supermarket, family home, school, recreation center). Current and future environments depend on the age of the student. The younger the student, the fewer number of environments.
  3. Divide the environments into sub-environments. Sub-environments of a restaurant could be entrance, wait area, table area, toilets, and exit.
  4. Determine the activities in each of the sub-environments. Within the sub-environment of the restaurant there are: reading the menu, ordering food, waiting for food, and paying for food.
  5. Identify the skills necessary to engage in each activity. By separating each activity into steps necessary to perform the task, the exact skill sequence can be determined. This is called a task analysis.

When the teacher completes the five steps of the ecological inventory, the teacher assesses the ability of the student to perform each skill. If the levels of skill are beyond the ability of the student, he will only be frustrated and not learn. Second, the teacher records what the student can and cannot do and compares it to the actual skills needed for doing the task. Third, the teacher analyzes the skills the student cannot do. If the student seemed capable of learning the skills, then instruction is necessary. If the student cannot learn the skills, then adaptations must be made. The following description of task analysis and table are quoted from Exceptional Lives, pages 300-301:

DEVELOPING A TASK ANALYSIS

The place to start when developing a task analysis is to identify the activity or task to be analyzed. Let's use one of Kasey's tasks at work: preparing fruit cups.

1. Observe someone complete the task or complete the task yourself. Make sure the person you are observing is completing the task according to correct procedures. In this example, Kasey's teacher watched the supervisor prepare the fruit cups.

2. Write down each skill step that must be performed to complete the task. Think of it as the chain of steps that must be followed in order to complete the task.

3. Each step in the task analysis should be written for only one skill. For example the phrase "opens lid and throws it away" needs to be broken down into two steps: (a) opens lid and (b) throws lid away.

4. Each skill step should be written in such a way that it describes an action. "Line up fruit cups on the trays" is an example of an action descriptor. "Completes job" is not; it does not tell you specifically what skill or skills are needed to carry out the step.

5. Include any natural cues that could be used as part of the teaching process. For students with severe disabilities who will be partially participating in the task, include the activities of the person who is assisting him or her. For example, a step in a task analysis might read: "After the coworker places the can in the can opener and locks it in place, Kasey will turn on electric can opener."

6. Include any communication or social interaction that will be necessary to complete the task. On Kasey's task analysis, it might read: (b) Take fruit can over to can opener, (c) Point to "I need help" in communication book so co-worker can place can in can opener.

7. Once all of the steps, materials, conditions, and natural cues have been identified for the task, then you can write a final draft of the steps on a task analysis form. These forms usually include space for multiple recordings of the steps and generally have a key to identify the prompting hierarchy needed to complete the task. Here's an example:

An important component of a task analysis is the ability to record the steps that the student completes correctly and independently. Using task analyses, teachers can track the progress of each student.

Name _____________
+ Correctly completed step
V Verbal prompt
G Gestural prompt
P Physical prompt
Date: 9/5 9/7 9/9 9/12
1. Bring correct can of fruit from stockroom G G V +
2. Bring fruit cups from stockroom V V + +
3. Open can of fruit P P P P
4. Throw away lid G + + +
5. Line up fruit cups on tray P P P G
6. Locate serving spoon G V + +
7. Scoop fruit from can P P P P
8. Place correct amount of fruit in each cup P P P P
9. Complete all cups on tray P P P P
10. Place trays in refrigerator P G G V

Question:
4. When thinking about an ecological model for training a person with S/M disabilities, this type of model resembles:
(Only one of the following answers is correct.)
a) social stories that describe activities for autism.
b) adaptive skills for teaching children with mental retardation.
c) teaching a child how to bake a cake.

 

 

How Can Persons with S/M Disabilities be Taught?
Systematic Instruction
Professionals who use systematic instruction teach students to follow a series of specific procedures. Throughout the instruction, they collect information about the performance of the student. this helps them make decisions about the effectiveness of the instruction. Research shows that this type of instruction is more effective than other types.

To be certain the student learns the correct steps in sequence, teachers will verbally or manually prompt a child to demonstrate the skill. The prompts help the student to make correct responses. The more correct responses, the easier it is for the student to be reinforced in his behavior. When the student learns the correct response, the teacher gradually removes the prompts so that the student responds independently. The prompts range form least intrusive (gesture or verbal cue) to the most intrusive (physical guidance).

The student needs to learn to move as quickly as possible from dependency on prompts to dependency on natural cues in his workplace. These cues can be materials the person uses, interactions with others that start the process of work, and the actual work place.

What are some natural cues for Kasey in her job of sorting silverware? What is the work place, materials worked with, and the people she sees as she comes to work? Did you identify the following?

  1. entering the dish room,
  2. a container of silverware placed on her counter,
  3. her supervisor telling her to begin sorting silverware.

If students do not respond to natural cues, they may depend on their teacher or others to help them. What would happen if Kasey started arranging her materials only after the teacher neatly arranged her materials at her workstation and gave her a verbal request "sort the silverware"? The chances are that Kasey would sort the silverware only if everything were in place. She would have a difficult time being independent.

Rewarding correct performance is another important part of systematic instruction. For students with S/M disabilities, immediate forms of reinforcement are necessary. For example, her mother uses Kasey's love of music as a reinforcer for completion of household chores. If Kasey completes her chores, she may listen to music.

Partial Participation and Adaptations
Partial participation principle means that students with S/M disabilities should not be prohibited from daily activities because they might not have the ability to function independently in certain environments. Often they can complete a task if it is adapted in some way. Instead of excluding students with S/M disabilities from activities, instructional strategies can make adaptations for each student. There are four types of adaptations: modifying skills, using personal assistance, using an adaptive device, and encouraging others to change their attitudes. Assistive technology using computer chips has helped these students to increase their community participation.

Collaboration
To help students with S/M disabilities to be included in schools and communities, several types of professionals give their expertise and regular citizens can be of help as well. An example of professional collaboration is the school nurse who gives health services. The nurse may be the one who administers medications during the day and records the child's reaction to them, and may also report her findings to the education team who plans for the child's specific schooling.

Professionals can also help the families of the S/M child by helping them find money and equipment needed to care for their child. There may be organizations or funds that give directly to handicapped children. Families also need the help of friends, family members and their church to help them with daily tasks. One mother wrote the following paragraph:

"If only practical offers to help were a traditional response to handicapped children - offers to baby-sit while we shop for groceries, offers to take our children for a walk around the block, offers to take them swimming, offers to give any reprieve that can give parents a chance to relax or tend to other things would be a great help. Sympathy and pats on the back are nice, but we need different gifts - practical help, time, and manpower to fight against our enemies of fatigue and loneliness."

Students without disabilities can also be of help. There can be a peer tutor program where teens help disabled teenagers. Examples are helping with putting on makeup or choosing clothes in a store, walking in halls or eating lunch together. Students sometimes volunteer to be a buddy for the S/M child. They help the disabled child during recess times, carry food on a tray for them at lunch, or attend some after school clubs together.

In the work setting, a job coach assists the person with S/M disabilities to learn his job skills and social skills with other employees. The job coach can help the person with disabilities to greet his co-workers every day and teach the co-workers about communication with this person.

Citizens in the community can also volunteer their time to help a family with such a child. A neighbor "Grandma Ruth" came to help one family when their daughter was born. The daughter had S/M disabilities and doctors thought she would die, however, she has lived. Grandma Ruth comes every Thursday to help the family with childcare and housecleaning. That was two years ago. Now she is part of the family and takes the children to various school functions and parties.

Question:
5. The best help for a family with a child who has severe/multiple disabilities is to give:

 

 

Life-Span Stages for the Child with Severe and Multiple Disabilities
At birth, these children need intensive medical care and intervention. If their health stabilizes, the family begins to focus on the need for services and supports to help them care for the child. This means finding government or private organizations that give parents education about their child, funding for equipment, and practical help in the home. The parents also need to know how and when an educational program will begin for this child. Sometimes there is home teaching and therapy, but often the child goes to school.

During the elementary schools years, the child's health stabilizes and medical crises decrease. Now the focus is on appropriate education. During high school years, these children may have already completed the formal educational program and move toward to community living programs.

An example is a classroom in Washington, D.C. Students here are washing dishes, brushing their teeth, and catching up on the news. This is not an ordinary classroom, it is a private house where seven students live with their instructors. (Usually, the instructors work for 8 hours and then a social work student is with them in the late afternoon and through the night.) This is the best location to learn essential housekeeping skills. The day is spent in a variety of ways - visiting the library to get videos, shopping for food, and visiting the zoo. It is a way for students to learn practical and functional skills for everyday life.

A program has been arranged for these students to work on a nearby college campus. Through work, they can interact with other people and not be limited to interaction only with their housemates. They are invited to university sports events and various celebrations.

Through living in the community, the students learn to be independent and a part of the neighborhood. When should this training start? It needs to begin early because these students will need a significant amount of instruction. Since support service from the local or federal government is limited, families and professionals begin early to plan for these students when they leave school.

Question:
6. How can the various therapies and interventions give optimal help to the person with S/M disabilities?
(One or more of the following answers may be correct.)
a) by early detection of the disabilities.
b) by starting therapies early.
c) by planning as the child grows through infancy and childhood to young adulthood.

 

 

The Future
What does the future hold for Kasey? Hopefully, those like her will be accepted and integrated into society as people who are different, but have needs and abilities as everyone else does. Kasey's mother dreams that Kasey will someday live independently, perhaps with a friend. She hopes that Kasey will be able to continue her job in the school cafeteria and not sit at home all day with nothing to do. She wants Kasey to enjoy the company of others - see movies, eat at restaurants, go shopping, and enjoy the company of other people.