Unit 1: Understanding groups with high support needs
1.1. Definition, description and understanding of high support needs, severe/profound disabilities
1.2. Working with individuals having high support needs – strength, issues and challenges
1.3. Concept of assistance and support at various stages for persons with high support needs– childhood, adolescence, adulthood.
1.4. Levels of support (IASSIDD) – limited, intermittent, extensive, pervasive
1.5. Service avenues for groups with high support needs
1.1 Definition, description and understanding of high support needs, severe/profound disabilities
Developmental disabilities include limitations in function resulting from disorders of the developing nervous system. These limitations manifest during infancy or childhood as delays in reaching developmental milestones or as lack of function in one or multiple domains, including cognition, motor performance, vision, hearing and speech, and behavior.
Cognitive disabilities in children include mental retardation as well as specific learning disabilities in children of normal intelligence. Mental retardation is defined as subnormal intelligence (intelligence quotient [IQ] more than two standard deviations below that of the population mean), accompanied by deficits in adaptive behavior. Grades of mental retardation are typically defined in terms of IQ. Children with mild mental retardation, the most common form, are limited in academic performance and consequently have somewhat limited vocational opportunities. Adults with mild mental retardation typically lead independent lives. Children with more severe grades of mental retardation (moderate, severe, and profound) are more likely to have disabilities (e.g., vision, hearing, motor, and/or seizure in addition to cognitive disability) and to be dependent on others for basic needs throughout their lives.
In contrast, specific learning disabilities result not from global intellectual deficit, but from impairments in one or more of the specific “processes of speech, language, reading, spelling, writing or arithmetic resulting from possible cerebral dysfunction.” Children with specific learning disabilities are usually identified as such only after entering school, where a significant discrepancy is noted between their achievements in specific domains and their overall abilities. With special educational accommodations, these children may learn to overcome their limitations and demonstrate normal or even superior levels of achievement.
Now any person with benchmark disability (40% and above) and with a score in the range of 60 to 100 on the set out criteria under the newly included chapter in the rules under the Right to Persons with Disabilties Act will be eligible for “high support needs”. All such eligible persons may be recommended to notified state authorities by a district level assessment board for applicable benefits including support through relevant government schemes.
In law “high support” means an intensive support, physical, psychological and otherwise, which may be required by a person with benchmark disability for daily activities, to take independent and informed decision, and to access facilities and participating in all areas of life including education, employment, family, community life, treatment and therapy.
The term High Support means comprehensive support or support that is related with all aspects of a person’s life, required by a person with Benchmark Disabilities for performance of daily activities. These activities include basic activities of daily living like bathing, personal hygiene and grooming (including brushing/combing, dressing) toilet hygiene, walking, get in and out of bed, and get into and out of a chair; the broader definition (moving from one place to another while performing activities).
In addition to this, High Support includes psychological support which means, support relating to the mind and management of emotions and moods etc. This support is required so that a person with disabilities is able to make decisions and make use of various facilities for education, employment, etc. A sign language interpreter, for instance, enables a deaf person to work in a mainstream professional environment. A personal assistant helps a wheelchair user travel to meetings or work. A child with Autism Spectrum disorder might require regular guidance and counseling to understand the human relationships around him. A person with intellectual disability might require counseling support on a day to day basis to develop his/her communication skills or to perform daily activities.
The purpose of High Support is also to ensure that a person with disability is able to participate in family life and community life and also proactively participate in his/her own treatment and therapy.
People with severe disabilities are considered to have the following disabilities: severe intellectual disability (formerly referred to as “mental retardation”), autism, deaf-blindness, and disabilities. They present great learning, behavioral, personal, social, physical, and sensory challenges and have extensive support needs (e.g., related service providers, paraprofessionals, peer tutors). Additionally, a number of these individuals may have serious medical and health-care needs and be dependent on medical technology (e.g., mechanical ventilator, gastric feeding tube). Historically, those with severe disabilities have been some of the most devalued, persecuted, and marginalized people. Because of their learning and support needs, expectations for students and adults with severe disabilities have been low, as it was thought they had limited capacity to acquire, process, and apply information and achieve a true level of independence or competency. However, with changing attitudes in the 1970s about equity, disability rights, and social acceptance, a growing body of research literature emerged that demonstrated that individuals with severe disabilities have a much greater learning capacity than previously thought. For much of the last century, the primary curricular focus has been on teaching functional community and daily living skills. This was driven by the belief of the professional community and parents that acquisition and application of such skills would enhance the independence of individuals with severe disabilities, and, in turn, increase their social integration and acceptance. To further promote social acceptance, research was conducted in the 1980s and 1990s that examined ways to increase the social competence of individuals with severe disabilities. In the late 1990s, following changes in general educational policy and social opinion, there was growing consensus that students with severe disabilities can indeed benefit from academic instruction, and that such instruction—particularly in the areas of literacy, mathematics, and science—should be provided. Further, in the last forty years or so, there has been a shift in thinking about educational placement. Currently, there is general consensus that people with severe disabilities need to be served and participate in inclusive or integrated school and community settings (e.g., supported employment, community-based living) and not in segregated or sheltered settings as previously thought.
Experts divide the types of cognitive impairment into four categories: mild intellectual disability, moderate intellectual disability, severe intellectual disability, and profound intellectual disability. The degree of impairment from an intellectual disability varies widely. DSM-V places less emphasis on the degree of impairment (i.e. IQ scores) and more on the amount and type of intervention needed.
While IQ scores are still relevant and important in assessing the level of intellectual disability, the new DSM-V adds another layer of diagnostic criteria. Mental health professionals must consider the person's ability or impairment across three skill areas: conceptual, social, and practical life skill.
Severe intellectual disability
· IQ 20 to 34
· Considerable delays in development
· Understands speech, but little ability to communicate
· Able to learn daily routines
· May learn very simple self-care
· Needs direct supervision in social situations
Only about 3 or 4 percent of those diagnosed with intellectual disability fall into the severe category. These people can only communicate on the most basic levels. They cannot perform all self-care activities independently and need daily supervision and support. Most people in this category cannot successfully live an independent life and will need to live in a group home setting.
Profound intellectual disability
· IQ less than 20
· Significant developmental delays in all areas
· Obvious physical and congenital abnormalities
· Requires close supervision
· Requires attendant to help in self-care activities
· May respond to physical and social activities
· Not capable of independent living
People with profound intellectual disability require round-the-clock support and care. They depend on others for all aspects of day-to-day life and have extremely limited communication ability. Frequently, people in this category have other physical limitations as well. About 1 to 2 percent of people with intellectual disabilities fall into this category.
According to the new DSM-V, though, someone with severe social impairment (so severe they would fall into the moderate category, for example) may be placed in the mild category because they have an IQ of 80 or 85. So the changes in the DSM-V require mental health professionals to assess the level of impairment by weighing the IQ score against the person's ability to perform day-to-day life skills and activities.
1.2 Working with individuals having high support needs – strength, issues and challenges
The term severe disabilities refers to a deficit in one or more areas of functioning that significantly limits an individual's performance of major life activities. The label of severe disabilities can include challenges in one or more of the following areas:
This definition of severe disabilities is rather vague, but it reflects the official definition used by school systems. In reality, students classified as having severe disabilities display a wide range of abilities and needs that a school team must address. Severe disabilities stem from a vast number of causes—what's most important is their impact on the students. Students with severe disabilities possess a range of potential in the school setting, and it's crucial that their education be individualized.
To support, parent, or educate a child with disabilities, it’s important to know:
Schools are required by law to provide a free and appropriate public education in the least restrictive environment. Within those parameters, different schools adapt different approaches for meeting the needs of students with severe disabilities.
Students with severe disabilities often receive services from a range of professionals. Some examples are:
Each specialist involved in the care of the student must work together cooperatively to address the needs of the student in a holistic fashion. If this still sounds confusing, it's because there are many possibilities in the realm of severe disabilities. To make things more clear, let's visit a hypothetical school classroom and meet some students with severe disabilities.
Persons with disabilities are often healthy, and disability should be distinguished from illness. In the medical model, disability is viewed as a deficiency or disease that needs to be overcome. However, persons with developmental disabilities have a wide range of strengths, challenges, and support needs.
Regardless of functional limitations, with appropriate medical care, accommodations, and decision-making support, persons with developmental disabilities can live quality lives in their own homes and communities. Accommodations can include disability services, housing modifications, and adaptive equipment. Physicians can support full inclusion and access to medical care for patients with disabilities by ensuring that their practices comply with guidelines for physical access. This may require investments in adaptive equipment, such as wheelchair scales and lifts and high-low examination tables, and implementation of programmatic changes, such as longer appointments, reduced wait times, and home visits. For some patients, access can be improved with changes to the sensory environment, such as eliminating strong scents, and turning down alarms, televisions, and fluorescent or bright lights.
Communication is the foundation of patient care. Communication can include speech, sign language, writing, letter boards, voice output devices, pictures, facial expressions, gestures, vocalizations, and behavior. The physician should first note the patient's intent because, for example, not all movements are meant to be communication. Persons with cerebral palsy or autism may have difficulty controlling movements, and these involuntary movements can be impulsive or reflect difficulty with inertia. This can be misinterpreted as intellectual disability, lack of interest, aggression, or defiance. Physicians should communicate directly with their patients, even those who have communication or cognitive differences. Gathering information directly from patients, as much as possible, is important because only they can report on their internal thoughts and symptoms.
Persons with developmental disabilities can and do have sex, marry, and have children. They have a full range of sexual orientations. Gender dysphoria has been found to be particularly common among persons with autism.32 Adults with developmental disabilities should receive sex education and access to a full range of reproductive services.
Strategies to work with severe and profound disabilities
Know the needs, play to the strengths. Each student with disabilities will have his or her own set of skills, strengths, and learning needs. Learning more about each disability of the student will be helpful in addressing those learning needs. Also find out more about the student’s strengths and interests, enthusiasms, and preferences. These can be used to motivate the student and enrich the education he or she receives. Parents are a great source of this information. So is the student!
Make modifications. Students with disabilities often need substantial modifications and accommodations in the classroom.
Allow partial participation, as necessary. Partial participation means that students with disabilities aren’t excluded from activities because they might not be able to complete a task fully or independently. Modifications can be made to the task itself or to how students participate.
Consider assistive technology (AT). AT is appropriate, even essential, for many students with disabilities. Without AT, there may be many tasks they simply cannot perform or will have difficulty performing. Computers, augmentative/alternative communication systems, and communication boards are just some examples of helpful AT.
Does the student need textbooks in another format? IDEA requires that students with print disabilities be provided with accessible instructional materials. There are many disabilities that affect a student’s ability to use print materials; does your student have one such disability?
Practice and reinforce. Does your student’s disabilities affect his or her intellectual functioning? If so, he or she will be slower to learn new things and will have difficulty applying that learning in new situations. Be concrete; give lots of hands-on opportunities for learning and practice. Give feedback immediately. Repeat the learning task in different settings.
Support related services in the classroom. Depending on the student’s disabilities, he or she may need related services to benefit from special education. Related services may include speech-language therapy, occupational therapy, physical therapy, or orientation and mobility services. It’s best practice to provide these services in the classroom during the natural routine of the school, although some may be provided in other settings. Work with the related services personnel, as appropriate.
Address behavior issues. Behavior can be affected by having disabilities, especially a combination of disabilities. If a student’s behavior is affecting his or her learning or the learning of others, IDEA requires that behavior be addressed in the IEP.
A paraprofessional in your classroom? Some students with disabilities will require the support of an aide or paraprofessional. If this is so for your student, it helps to know about working with paraprofessionals.
Encourage the student’s independence. It’s natural to want to help a student who’s struggling to do a task single-handedly, especially when you know there’s a disability involved. But it’s important for the child to develop the skills it takes to live as independently as possible, now and in the future.
When the time comes, support transition planning. IDEA requires that IEP teams and students plan ahead for the student’s transition from school to the adult world. There’s a lot to know about transition planning.
How to Teach Students with Severe Disabilities
Systematic instruction, which originates from the principles of applied behavior analysis, has a strong evidence base spanning more than 60 years supporting the teaching of community and daily living skills (Spooner, Browder, & Mims, 2011a). For example, Miller and Test (1989) compared the effects of constant time delay and most-to-least intrusive prompts on the acquisition of laundry skills for students with moderate intellectual disabilities. Recent literature reviews documented a strong evidence base for using systematic instruction to teach academic skills to this population (Browder, Ahlgrim-Delzell, Spooner, Mims, & Baker, 2009; Morse & Schuster, 2004). Jameson, McDonnell, Johnson, Riesen, and Polychronis (2007) illustrated this practice by teaching symbol and word recognition to students with moderate intellectual disabilities using constant time delay and differential reinforcement.
Defining the skill. The first step in using systematic instruction is to define an observable, measurable skill to be taught. Behaviors can be categorized as discrete—one step— or chained—a series of discrete behaviors that equate to a complex behavior (Alberto & Troutman, 2009). Chained tasks can be taught by breaking components of the task into the discrete steps of a task analysis (Spooner, 1984). A strong evidence base exists for using taskanalytic instruction to teach daily living and community skills. Mechling, Gast, and Langone (2002) effectively used video simulations to teach students with moderate intellectual disabilities the steps of a task analysis for locating items in a grocery store.
Academic skills. This method can also be applied to academic skills. Courtade, Browder, Spooner, and DiBiase (2010) taught teachers to follow steps of a task analysis to teach science concepts to students using inquiry-based science instruction. Sometimes, teachers may choose to focus on a set of discrete responses like a list of sight words or math facts.
Data collection. Once the target skill has been defined as a discrete response, set of responses, or task analysis, these responses can be entered on a data sheet for ongoing progress monitoring. Some research suggests that teachers can use the pattern of their data to make instructional decisions (e.g., Belfiore & Browder, 1992; Browder, Liberty, Heller, & D’Huyvetters, 1986). For example, if progress is too slow, teachers may want to refine their prompting system or increase opportunities to respond. Data-based decision making is the term used when teachers use their data to plan instructional changes.
Prompting. Once the target behavior is defined and the data sheet is created, the teacher must plan the response prompting and fading systems to use for instructing target skills (Wolery, Ault, & Doyle, 1992). These systems include simultaneous prompting, time delay, system of least prompts, most-to-least intrusive prompts, and graduated guidance.
Simultaneous prompting. This method consists of one response prompt (e.g., verbal, model) concurrently presented with the target stimulus, which is eliminated after several instructional trials. A strong evidence base suggests that this prompting system is an effective strategy for teaching discrete or chained tasks and can be simpler than other prompting strategies (Morse & Schuster, 2004). For example, Smith, Schuster, Collins, and Kleinert (2011) used simultaneous prompting to teach restaurant sight words and food classification information to secondary students with moderate and severe intellectual disabilities. To teach chained Page 13 of 86 academic skills, Waugh, Fredrick, and Alberto (2009) used simultaneous prompting to teach sounds and blending skills to students with moderate and severe disabilities.
Time delay. There is also a strong evidence base for using time delay, a system in which the prompt is concurrently presented with the target stimulus and then faded with small increments of time over successive trials. Time delay has strong research support for teaching picture and word recognition skills to students with severe disabilities (Browder et al., 2009; Walker, 2008). Riesen, McDonnell, Johnson, Polychronis, and Jameson (2003) compared the effects of time delay and simultaneous prompting on the academic skills of students with moderate and severe disabilities. Both prompting systems were effective in teaching vocabulary for words and definitions across content areas (i.e., science, German, and United States history). In a recent study, Zisimopoulos, Sigafoos, and Koutromanos (2011) successfully used constant time delay and video prompting to teach students with moderate intellectual disabilities the steps of conducting an Internet search.
Least intrusive prompts. Another prompting alternative with a strong evidence base is the system of least intrusive prompts—an instructional strategy that delivers prompts only as needed to teach discrete or chained tasks. Doyle, Wolery, Ault, and Gast (1988) reviewed 90 articles that document the use of a system of least prompts to teach students with severe disabilities. In a system of least prompts, the instructor may begin with a verbal direction, followed by a model and then physical guidance, only providing as many of these prompts as the student needs to produce the response. Emerging evidence suggests that this strategy can be used to teach academic skills, including early literacy skills (e.g., Browder, Mims, Spooner, Ahlgrim-Delzell, & Lee, 2008; Browder, Trela, & Jimenez, 2007); listening comprehension(e.g., Mims, Hudson, & Browder, 2012); and reading comprehension (e.g., Browder, Hudson, & Wood, 2013).
Most-to-least intrusive prompts. Sometimes the safety or motoric demands of a task suggest the need to begin with a more intrusive prompt such as physical guidance. A strong body of evidence supports the use of most-to-least prompting to teach vocational and daily living skills, such as cooking and sewing (e.g., Aykut, 2012). MacDuff, Krantz, and McClannahan (1993) employed this procedure to teach the use of picture schedules to promote on-task behaviors for students with autism. Instructors initially used physical guidance in training and then faded physical prompts over time.
Reinforcement. Whatever prompting is used, instructional planning must also include plans for reinforcing correct responses. Reinforcement should always include praise and, depending on the motivational needs of the student, tangibles (e.g., stickers, extra computer time). In addition, teachers must decide on a schedule of reinforcement for teaching a skill. Initially, teachers should reinforce every correct response with descriptive praise, like, “Good job saying m!” (Cooper, Heron, & Heward, 2007). Eventually, all forms of reinforcement should be faded so the student is able to consistently perform the skill without attention from the teacher. For example, the teacher may fade to reinforcing only unprompted correct responses and then about every third response. All studies that used systematic prompting also included reinforcement systems, making this an essential component of a systematic instruction-intervention plan.
Generalization. With systematic instruction, it is important to train for generalization (Stokes & Baer, 1977). One way to promote generalization is to teach in contexts in which skills are most likely to occur naturally (e.g., general education classrooms, cafeteria, and community settings). Teaching in naturalistic environments can be in simulated or authentic community settings (e.g., Colyer & Collins, 1996; Mechling et al., 2002). For example, Mechling and colleagues (2002) taught students to read grocery aisle signs using simulated computer-based programs. All generalization probes occurred in real grocery stores. To teach generalization of academic content, Riesen and colleagues (2003) taught students to identify grade-aligned vocabulary in both special education and general education classrooms. Test probes in general education classrooms were embedded during naturalistic opportunities (e.g., transitions, breaks).
Another strategy for promoting generalization is teaching with multiple exemplars (i.e., teaching more than one type of target item; Collins, 2007; Collins, Karl, Riggs, Galloway, & Hager, 2010). The use of multiple exemplars encourages students to recognize relevant features of target stimuli. For example, Smith and colleagues (2011) promoted generalization by varying the materials (e.g., sight-word flash cards, real restaurant menus) used to train recognition of restaurant words. Browder, Ahlgrim-Delzell, Courtade, Gibbs, and Flowers (2008) incorporated multiple exemplars in an early literacy intervention by including multiple visual representations of single concepts or objects (e.g., students identify dog by identifying several different types of dogs throughout the training sessions). Additionally, Mims and colleagues (2012) promoted generalization of comprehension across different grade-aligned biographies. Finally, general-case programming—teaching skills across all types of relevant materials (Alberto & Troutman, 2009)—is an effective strategy for increasing the likelihood that students will generalize skills to multiple naturalistic settings. To promote generalization to community settings, Colyer and Collins (1996) surveyed 12 local stores to determine the range of stimulus variation. For example, they noted whether the final price of a purchase was presented with verbal or visual cues. The teacher then used a store sample that reflected this variation.
Summary. A large body of research for teaching a wide range of discrete and chained skills to students with moderate and severe disabilities supports systematic instruction. Teachers should select prompting systems that match the complexity and nature of the target skill. Although there is a long history of effective systematic instruction for teaching daily living and community skills (Bambara, Koger, & Bartholomew, 2011), the past decade offered evidence that it is also effective for academic instruction (e.g., Browder et al., 2009).
Although teacher-delivered systematic instruction is highly effective, students with severe disabilities should also be provided with opportunities for self-directed learning so that they gain greater autonomy. Two strategies with strong research evidence for promoting self-directed learning are pictorial self-instruction and the Self-Determined Learning Model of Instruction (SDLMI). Directed inquiry, which has a moderate evidence base, is a recent strategy used to promote academic learning.
Pictorial self-instruction. In one study using pictorial self-instruction (Mithaug & Mithaug, 2003), students with autism learned to complete academic assignments using a picture-based graphic organizer planner. Students planned, completed, and evaluated their work by circling pictures according to the following categories: (a) Subjects to Work, (b) What I Will Do, and (c) What I Did. Several studies have taught students with severe disabilities to independently use picture activity schedules to complete tasks (e.g., Hume, Plavnick, & Odom, 2012; MacDuff et al., 1993). Students have also used pictorial self-instruction to engage in socially appropriate behavior (e.g., Schneider & Goldstein, 2010); prepare food (e.g., Lancioni & O’Reilly, 2002); and complete vocational tasks (e.g., Steed & Lutzker, 1997)
Self-Determined Learning Model of Instruction. The SDLMI teaches self-directed learning to students in three units: (a) setting a goal, (b) taking action, and (c) adjusting the total or plan (Wehmeyer, Palmer, Agran, Mithaug, & Martin, 2000). Students are taught to solve problems using four steps: (a) identify the problem, (b) identify possible solutions, (c) identify possible barriers, and (d) identify consequences of each solution. Agran and colleagues (2006) investigated the effects of SDLMI on the academic performances of three middle school students with severe disabilities. Results indicated a functional relationship between SDLMI and academic performance. Each student made immediate and rapid increases in identified academic goals. Shogren, Palmer, Wehmeyer, Williams-Diehm, and Little (2012) studied the influence of SDLMI on academic and transition goals and access to the general education curriculum for students with intellectual disabilities. Results indicated significant improvements in goal attainment and general curriculum access. The SDLMI model can also be used to improve self-determination. Wehmeyer and colleagues (2012) analyzed the effects of SDLMI on self-determination behaviors of students with intellectual disabilities. Using a randomized modified-equivalent-control-group time-series design for 2 years, students in the SDLMI group showed a significant positive difference on self-determination compared to the control group.
Directed inquiry. Directed inquiry has been used more recently to engage students with severe disabilities in academic learning. Students have been taught to use a directed-inquiry chart to answer questions about science and social studies topics (Agran et al., 2006; Browder, Trela, et al., 2012; Courtade et al., 2010; Jimenez, Browder, & Courtade, 2009). For example, with a KWHL chart, as used by Jimenez, Browder, Spooner, and DiBiase (2012), the teacher guided the students to identify (a) what they know [K], (b) what they want to know [W], (c) how to find out [H], and (d) what they learned [L]. Similarly, Bethune and Wood (2013) taught students to use a graphic organizer to identify question types and to independently answer wh questions (e.g., where asks for a place) about a text selection.
Summary. Studies have shown that students with severe disabilities have demonstrated the ability to engage in self-directed learning to complete functional, employment, and academic tasks. Research supports the benefits of teachers’ efforts to instruct these students in the use of pictorial self-instruction, directed inquiry, and SDLMI.
Peer tutoring as an instructional strategy has a strong body of evidence suggesting academic and social benefits for both the tutor and the tutee (e.g., McDonnell, Mathot-Buckner, Thorson, & Fister, 2001; Rohrbeck, Ginsburg-Block, Fantuzzo, & Miller, 2003). In this practice, a peer tutor—typically a same-age student from a general education classroom—delivers instruction to a student with disabilities—the tutee. Peer tutors are trained to incorporate active student responding, opportunities to respond, feedback, and reinforcement in instructional sessions (Heron, Villareal, Yao, Christianson, & Heron, 2006). Class-wide peer tutoring, which involves training peers to deliver instruction to designated tutees for all students in a class (Greenwood, Maheady, & Delquardi, 2002), has been implemented to teach students with severe disabilities across various settings and content areas.
Skills. Several studies illustrate the strong evidence base that supports peer tutoring for teaching skills to students with moderate and severe disabilities. Kamps, Locke, Delquardi, and Hall (1989) extensively trained two students from a general education fifth-grade classroom to deliver instruction in money skills, expressive language, oral reading, and comprehension skills to two students with severe disabilities. After tutors completed twelve 30-minute training sessions, they were able to (a) plan lists of target items; (b) decide when to provide models; and (c) deliver prompts, feedback, and consequences. Miracle, Collins, Schuster, and Grisham-Brown (2001) trained peers in high school to effectively deliver sight-word instruction using constant time delay. Similarly, Godsey, Schuster, Lingo, Collins, and Kleinert (2008) trained peers to deliver instruction on the chained tasks of food preparation to students with severe disabilities using constant time delay. Peers learned, with explicit training, to deliver systematic instruction, including praise and error correction.
Academics and social interaction. There is also a strong evidence base for using peer tutoring to promote social interactions and academic engagement (e.g., Carter, Cushing, Clark, & Kennedy, 2005; Carter, Sisco, Melekoglu, & Kurkowski, 2007). For example, McDonnell and colleagues (2001) used peer tutoring to increase academic engagement and skills in pre-algebra, physical education, and history. Collins, Branson, Hall, and Rankin (2001) examined the effects of peer tutoring on a chained task in an inclusive setting. Peer tutors were trained to deliver a system of least prompts to teach the steps of a task analysis for writing a letter. Jameson and colleagues (2008) trained peers to teach key concepts from health and art classes using constant time delay. Finally, Hudson, Browder, and Jimenez (in press) trained peers in elementary school to deliver read-alouds and a system of least prompts to teach listening comprehension to students with severe disabilities.
Summary. Peer tutoring has a strong body of research supporting the practice of training peers to teach both discrete and chained skills across a variety of content areas and settings and to promote social interactions. Additionally, peers are able to deliver systematic instruction Page 20 of 86 (e.g., constant time delay, system of least prompts, task-analytic instruction) with fidelity to promote academic and functional outcomes for students with severe disabilities.
Recent advances in technology have resulted in increased use of technological interventions for students with severe disabilities. The use of technology to teach skills to students with severe disabilities has a moderate to strong evidence base depending on the type of technology. Video prompting and modeling and computer-assisted instruction are two primary modes of technology interventions.
Video. Bellini and Akullian (2007) identified video modeling as a strong EBP for teaching social communication as well as functional and behavioral skills to students with autism spectrum disorders. Cannella-Malone and colleagues (2011) differentiated between video modeling and video prompting. Video modeling employs a video that includes the entire target behavior in one viewing whereas video prompting shows clips of each component of a target behavior. Using an alternating treatment design, Bellini and Akullian (2007) found that students with severe disabilities were more successful while viewing video prompts than while viewing video models. An additional study demonstrated that video prompting with error correction was more efficient than video prompting alone in teaching targeted skills to students with severe disabilities (Cannella-Malone, Wheaton, Wu, Tullis, & Park, 2012).
Other studies have investigated hardware devices (e.g., iPods, iPads) as tools for implementing video modeling and video prompting with individuals with severe disabilities (Kagohara et al., 2011; Van Laarhoven, Johnson, Van Laarhoven-Myers, Grider, & Grider, 2009). Results demonstrated that students with severe disabilities were able to use the devices and achieve positive outcomes on targeted skills (i.e., listening to music and completing job-related tasks).
Computer-assisted instruction. In addition to video prompting and modeling, computer-assisted instruction (CAI) is associated with a moderate level of evidence in teaching skills to students with severe disabilities (e.g., Ayres et al., 2013; Coyne, Pisha, Dalton, Zeph, & Smith, 2012; Knight, McKissick, & Saunders, 2013; Pennington, 2010; Ramdoss et al., 2012). Ramdoss and colleagues (2012) identified CAI as a promising practice for teaching social and emotional skills to students with autism spectrum disorders. Pennington (2010) and Knight and colleagues (2013) investigated the use of CAI to teach academic skills to students with autism spectrum disorders. Both literature reviews determined that the majority of studies used CAI to teach English language arts (ELA).
Although nearly all studies included in this review employed single-case design, Coyne and colleagues (2012) used a group design with teachers purposefully (not randomly) assigned to either Universal Design for Learning (UDL) or traditional literacy intervention. The UDL intervention included the use of e-books for students with severe disabilities. UDL involves planning an intervention for engagement, responses, and representation of materials that will be inclusive of all students. Student results indicated statistically significant increases in passage comprehension with UDL intervention.
Mechling (2011) reviewed studies using portable electronic devices (PDA) to teach students with moderate intellectual disabilities and autism spectrum disorders. PDAs showed promise for teaching the multistep skills needed for daily living, transitioning between tasks, and time/task management.
Ayres and colleagues (2013) proposed the following recommendations for using mobile technologies to assist with independence and life skills for students with moderate to severe disabilities.
Summary. Technology can be an effective way to deliver instruction for students with severe disabilities. Video modeling and video prompting are effective for students learning how to perform new daily living or social skills. CAI, including tablets and other mobile devices, can also be effective but require systematic instruction in the use of the technology.
1.3 Concept of assistance and support at various stages for persons with high support needs– childhood, adolescence, adulthood.
For many people with disabilities, assistance and support are prerequisites for participating in society. The lack of necessary support services can make people with disabilities overly dependent on family members – and can prevent both the person with disability and the family members from becoming economically active and socially included. Throughout the world people with disabilities have significant unmet needs for support. Support services are not yet a core component of disability policies in many countries, and there are gaps in services everywhere.
No one model of support services will work in all contexts and meet all needs. A diversity of providers and models is required. But the overarching principle promoted by the United Nations Convention on the Rights of Persons with Disabilities (CRPD) (1) is that services should be provided in the community, not in segregated settings. Person-centred services are preferable, so that individuals are involved in decisions about the support they receive and have maximum control over their lives.
Many persons with disabilities need assistance and support to achieve a good quality of life and to be able to participate in social and economic life on an equal basis with others (2). A sign language interpreter, for instance, enables a Deaf person to work in a mainstream professional environment. A personal assistant helps a wheelchair user travel to meetings or work. An advocate supports a person with intellectual impairment to handle money or make choices (2). People with multiple impairments or older persons may require support to remain in their homes. These individuals are thus empowered to live in the community and participate in work and other activities, rather than be marginalized or left fully dependent on family support or social protection (3, 4).
Most assistance and support comes from family members or social networks. State supply of formal services is generally underdeveloped, notfor-profit organizations have limited coverage, and private markets rarely offer enough affordable support to meet the needs of people with disabilities (5–7). State funding of responsive formal support services is an important element of policies to enable the full participation of persons with disabilities in social and economic life. States also have an important role in setting standards, regulating, and providing services (8). Also by reducing the need for informal assistance, these services can enable family members to participate in paid or income-generating activity.
Young children with disabilities have unique needs and challenges. Impairments may occur in cognition, motor, and sensory functions and occur in combination with each other. Many of these young children struggle to communicate their wants and needs, to freely move their body to access and engage their world, and to learn abstract concepts and ideas. The intensity of their needs means that delays are likely to have a pervasive impact on the child’s development and are likely to continue to impact the family and the child well beyond the early childhood years (Chen, 1997). In addition, however, these young children are a widely heterogeneous group in terms of their characteristics, capabilities, and learning needs. They may share some attributes, but they possess their own uniqueness as well. Thus as professionals and families plan for children with disabilities, an approach that considers the special needs each child exhibits and necessary supports required to meet the needs must drive the process.
Four areas of need – medical, physical, learning, and social emotional needs - should be addressed in developing interventions for young children with disabilities. Given that young children with disabilities often have chronic health needs that may require substantial effort by adults, professionals and families must work together to help improve the child’s experiences and learning opportunities. Young children with disabilities often exhibit motor development delays, which can result in difficulties with mobility, sitting, and standing. As with all young children, the learning outcomes for young children with disabilities center on the development of skills, membership, and relationship (Snell & Brown, 2011). To achieve these outcomes, professionals must implement additional supports to provide for a meaningful and individualized curriculum within the context of fully inclusive and natural environments. Finally, the area of social emotional learning needs including those relating to relationships and membership in community must be addressed (Soodak & Erwin, 2000). Given that children with disabilities may need assistance in engaging in interactions with others and other individuals may need assistance in understanding the communicative behaviors of these children, positive social interactions opportunities must be created.
When professionals use a needs-based approach to support the learning of young children with disabilities, it is possible to identify the individual supports each child needs to have greater access and engagement across environments. In addition, professionals must also ensure that the identified practices are those that we have the greatest confidence at this point in time that they will lead to positive impacts for the child. In short professionals must align their practices with recommended practices in the field. The following two broad areas of recommended practices that address each of the four need areas (i.e., medical, physical, educational, social-emotional interaction) have been identified to discuss the unique issues that need to be addressed for children with disabilities: collaborative practices and meaningful and individualized curriculum. In addition, the more narrow area of specialized instructional strategies, assistive technology, is also presented because of its potential pivotal role with young children with disabilities. In the remainder of this paper these three recommended practices will be briefly defined, discussed in terms of what do we currently know, and what do we still need to know.
Autonomy in the early childhood years occurs in the form of basic skill development such as learning independent mobility or independent personal care (Brown & Cohen, 1996). These early successes produce feelings of pride and begin to develop a foundation on which later successes are built. For very young children with disabilities, successes are often harder to come by because the nature of the disabilities experienced makes the acquisition of the “building block” tasks (e.g., independent mobility) a more challenging, and therefore, slower process. Slower acquisition, paired with well-intentioned, but overly intrusive instructional strategies, such as too frequent verbal and physical prompts, may limit opportunities for the young child with disabilities to have autonomous experiences. As the child grows older, opportunities for critical thinking may also be limited. Family members and caregivers may fear the outcomes of poor decisions and thus guide the child’s safe passage through developmental stages to adulthood by making many, if not all decisions, for the individual.
It is more challenging to suitably integrate adolescents with severe disabilities into general education courses. This is particularly true since the limited involvement of adolescents with severe disabilities in general education courses and extracurricular activities may reflect, in part, a perception that many students with severe disabilities lack the social and behavioral skills needed to participate actively in inclusive activities with their peers.
Autonomy, for adolescents with disabilities, includes taking responsibility for their behavior, making decisions regarding their lives, and maintaining supportive social relationships. One area where adolescents with disabilities can begin to exercise autonomy with the support and influence of family members involves making medical decisions. Terrone et al. studied the relationship between adolescent autonomy and their perceptions of feelings and attitudes experienced within the family in adolescents with and without disabilities. While all family members influence the level of autonomy in typically developing adolescents, mothers, once again, had a significant influence on the level of autonomy of adolescents with disabilities.
During the transition from childhood to adolescence and then from adolescence to adulthood, the need for autonomy increases. Families of adolescents with disabilities need to encourage, support, and assist in activities that encourage safe and secure autonomy development. Stigmatization can be a key contributor to low self-esteem in adolescents with disabilities, especially during this developmental period when they become more aware of the perceptions of others and comparison is increased.
In-home support services provide assistance to children and adults who live with their families, as well as to adults who live independently. These services are ongoing and are delivered according to the individual’s support plan. Recreational outings, assistance with personal care, money management and employment are among the services offered adults through in-home support services. In addition, assistance in obtaining their own homes, advocated for community inclusion and helped people live as independently as possible.
Some of the more common types of assistance and support services include:
· community support and independent living – assistance with self-care, household care, mobility, leisure, and community participation;
· residential support services – independent housing and congregate living in group homes and institutional settings;
· respite services – short-term breaks for caregivers and people with disabilities;
· support in education or employment – such as a classroom assistant for a child with a disability, or personal support in the workplace;
· communication support – such as sign language interpreters;
· community access – including day care centres;
· information and advice services – including professional, peer support, advocacy, and supported decision-making;
· assistance animals – such as dogs trained to guide people with a visual impairment.
1.4 Levels of support (IASSIDD) – limited, intermittent, extensive, pervasive
Levels of support
Intermittent support: Many people with intellectual disabilities do not require regular support or assistance. Instead, they may only require additional supports during times of transition, uncertainty, or stress. Usually people requiring this level of support would be categorized under the APA standards as mild intellectual disability.
Limited support: Some people with intellectual disabilities can learn to improve their adaptive behavior. With additional training, they can increase their conceptual skills, social skills, and practical skills. However, they may still require additional support to navigate everyday situations. People in this group would often be categorized by APA standards as moderate intellectual disability.
Extensive support: Other people with intellectual disability require support that is more intensive. These individuals have some basic communication skills and can complete some self-care tasks. However, they will usually require daily support. This level of support is usually associated with severe intellectual disability by APA criteria.
Pervasive support: Pervasive support describes the most intense level of support. Daily interventions are necessary to help the individual function. Supervision is necessary to ensure their health and safety. This lifelong support applies to nearly every aspect of the individual's routine. This classification is associated with those who have profound intellectual disability.
Problems with severity classification systems
The DSM-5 (APA, 2013) uses a categorical approach to the severity classification of intellectual disabilities (ID, formerly mental retardation). When a person is diagnosed with an ID, the severity of their disability is estimated. Severity falls into one of the four severity categories: mild, moderate, severe, or profound. However, there are several problems with this approach. These problems have led many professionals to lobby for a more useful method of classification.
A categorical approach to classification represents severity as four, separate, distinct categories. However, the severity of a disability may be more accurately described as a continuum. It could range from very mild to very severe with an infinite number of points in between these two extreme poles. Nonetheless, the question remains: Does a single dimension, called 'severity' communicate useful and practical information? Many professionals would argue it does not. For instance, what does it mean to have a "mild" intellectual disability? How does a person with a "mild" disability differ from someone with a "moderate" disability? Do two people with "mild" disabilities have the same needs and abilities? Do they each require the same type and intensity of support?
Because of these problems, some professionals argue for a classification according to the intensity of supports that are needed. This would be very similar to the method used by AAIDD. The AAIDD may indeed provide more useful and practical information. However, it still relies upon a categorical approach. Others have suggested a multi-dimensional approach to assess functional impairment along several dimensions. However, such an approach can become too complex for practical use. Therefore, while categorical classification lacks specificity, its advantage is simplicity.
1.5 Service avenues for groups with high support needs
Supported Living is a service that helps disabled people to live independently by providing support in those areas of their life where help is needed.