Unit3: Multiple Disabilities
3.1 Concept and definition of multiple disability (MD)
3.2 Assessment, teaching and curriculum for children with multiple disabilities.
3.3 Communication Training
3.4 Services and Educational Placement options
3.5 Behaviour Problems and interventions.
3.1 Concept and definition of multiple disability (MD)
Children who have a combination of severe disabilities are called “Multiply Disabled”. Caring for multiply and severely disabled children is never easy and they need an enormous amount of time, patience and love.
Realising the need for promotion of services for children with multiple disabilities, an autonomous organization of the Ministry of Social Justice and Empowerment, Government of India, was set up under the “National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities” Act (Act 44 of 1999).The National Trust was set up to find an answer to the worries of parents of such children.
DEFINITION OF MULTIPLE DISABILITIES
Multiple disabilities - “concomitant impairments (such as mental retardation-blindness, mental retardation-orthopedic impairment, etc.) the combination which causes such severe educational needs that they cannot be accommodated in programs solely for one disability. (IDEA)
According to the act “Multiple Disabilities” means a combination of two or more disabilities as defined in clause (i) of section 2 of the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 (1 of 1996). Disabilities under the National Trust Act are in fact Developmental Disabilities caused due to insult to the brain and damage to the central nervous system. These disabilities are Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities. These are neither diseases nor contagious nor progressive. They cannot be cured by drugs or surgery. But early detection and training improve outcome. This is done using the services of Physio-Occupational and Speech Therapists, Community Based Rehabilitation Workers and Special Educators.
The combination of disabilities and degree of severity is different in each child. The time at which the disability occurs in the child, what is known as the ‘age of onset’, may also range from birth to a few days after birth, from early childhood till late teens. Sometimes children are born with one disability but acquire the second or third disabling conditions during childhood. The characteristics and the needs of the children depend on the nature of combination of the disabilities, the age of onset and the opportunities that have been available to a child in his environment.
Multiple Disability refers to: a combination of two or more disabling conditions that have a combined effect on the child’s communication, mobility and performance of day-to-day tasks.
We can say that just as every child is different, similarly every child with MD is different. However there are some things that this group of children have in common.
· It affects the all-round development of the child
· Communication with the world around is most severely affected
· Opportunities to interact with the environment becomes very limited
· Ability to move around in the environment is restricted
· Need regular help in simple day-to-day activities such as wearing a shirt, opening a door,
· Finding a chair to sit down and so on.
· A highly structured educational / rehabilitation programme helps in their training.
3.2 Assessment, teaching and curriculum for children with multiple disabilities.
The earlier children with or at risk of disabilities receive assistance and the sooner their families receive support towards their children’s development, the farther they will go in life.
The following Early Intervention Steps may be needed to help the child with multiple disabilities to reach its maximum independence in getting ready for school.
· Assisting technology devices and services - equipment and services that are used to improve or maintain the abilities of a child to participate in such activities as playing, communication, eating or moving.
· Audiology - identifying and providing services for children with hearing loss and prevention of hearing loss.
· Family Training - services provided by qualified personnel to assist the family in understanding the special needs of the child and in promoting the child’s development.
· Medical Services - only for diagnostic or evaluation purposes.
· Nutrition Services - services that help address the nutritional needs of children that include identifying feeding skills, feeding problems, food habits and food preferences.
· Occupational Therapy - services that relate to self-help skills, adaptive behaviour and play and sensory, motor and postural development.
· Physical Therapy - services to prevent or lessen movement difficulties and related functional problems.
· Psychological Services - administering and interpreting psychological tests and information about a child’s behaviour and child and family conditions related to learning, mental health and development as well as planning services including counselling, consultation, parent training and education programs.
· Rehab worker/Special teacher/Community worker - someone who works in partnership with the family by providing assistance and services that help the family to coordinate and obtain their rights as well as in preparing an assessment of the social and emotional strengths and needs of a child and family and providing individual or group services such as counselling or family training.
· Special Instruction - includes designing learning environments and activities that promote the child’s development, providing families with information, skills, and support to enhance the child’s development.
· Speech-language Pathology - services for children with delay in communication skills or with motor skills such as weakness of muscles around the mouth or swallowing.
· Vision Services - identification of children with visual disorders or delays and providing services and training to those children.
· Health Services - health-related services necessary to enable a child to benefit from other early intervention services.
3.3 Communication Training
A communication
disability is a barrier or barriers affecting the
reception or transmittal of information. It may be severe enough to interfere
with an individual academically, occupationally or socially. Problems with
communication can have a minimal to huge impact and can define various
disabilities.
Communication
is probably the one area that is most significantly affected in children with
multiple disabilities. The children are unable to see or hear or follow the
different ways in which their brother and sister play with each other, elders
are greeted, standing in a line to get a ticket or passing a bottle of water
around a dining table.
Fortunately, our knowledge of speech and hearing
has expanded due to the research by professionals in medicine and allied
fields, such as special
education, speech and language, audiology, rehabilitation,
child development and other disability technology. These experts have
been studying communication and applying modern techniques to the issues at
hand. Assistive
technology professional have developed numerous new
strategies, software and tools for aiding, augmenting and teaching both
students as well as adults with language
and communication disabilities.
Program
Development Associates Communication Store has a collection of educational and information resources and
videos that include assistive
communication, augmentative and adaptive assistive technology for
adults and children with communication disabilities and the professionals that
help them.
Alternative and augmentative communication devices (AAC): These devices help people with speech impairments or person having low vocal volume to communicate such as speech generating devices, voice amplification aids and communication software. For visually impaired person, devices as magnifier, Braille or speech output devices, large print screens, closed circuit television for magnifying documents, etc.
Supporting meaningful communication in individuals with multiple sensory, cognitive, and physical impairments has been a central concern for special education and rehabilitation professionals for many years. Sign language is the most obvious choice of communicative skills that can aid communication and can be very effective in developmentally capable individuals with dual sensory impairments. However, in individuals with multiple disabilities and additional cognitive issues, sign language can sometimes be a limiting communication strategy. Gestural communication alone often restricts social interaction in this population to the immediate present, to items or things that can be touched at that particular moment. In addition, many individuals with coexisting physical impairments are unable to effectively use gestural communication of any kind due to limitations in their fine motor skills. Materials and tools designed to augment communication for students with multiple disabilities can be used to bridge this gap and provide these individuals with the means to communicate and make purposeful choices in their lives.
The use of augmentative communication systems for individuals who are unable to communicate by other means has been steadily increasing over the last thirty years, as both technology and research has risen to the challenge. Augmentative and alternative communication can be defined as any instructional technique, device, or system that serves to support and bolster communication in individuals with multiple sensory, physical, and cognitive impairments. This can include tangible and tactile symbol systems, choice boards, object prompts and symbols, physical modeling and prompting, and any number of techniques reliant on computer or microswitch technology. Microswitches are typically used with those students with the most limited physical range of motion; these devices control for fatigue by allowing the manipulation of technology with the least expenditure of energy. The ultimate goal of augmentative and alternative communication devices and systems is to provide the student with the means to communicate effectively with others, sharing in the countless emotional and social benefits that can come from a reciprocal interaction with another person. Whether low tech or high tech, augmentative communication devices all share four key features: symbols, displays, selection, and output.
3.4 Services and Educational Placement options
PLANNING FOR NEEDS-BASED EDUCATIONAL SUPPORTIVE SERVICE
Educational Placement: As far as possible, every child with special needs should be placed in regular schools, with needed support services.
Aids and Appliances: All children requiring assistive devices should be provided with aids and appliances, obtained as far as possible through convergence with the Ministry of Social Justice
and Empowerment, State Welfare Departments, National Institutions or NGOs.
Support Services: Support services like physical access, resource rooms at cluster level, special equipment, reading material, special educational techniques, remedial teaching, curricular adaptation or adapted teaching strategies could be provided.
Teacher Training: Intensive teacher training should be undertaken to sensitize regular teachers on effective classroom management of children with special needs. This training should be recurrent at block/cluster levels and integrated with the on-going in-service teacher training schedules in SSA. All training modules at SCERT, DIET and BRC level should include a suitable component on education of children with special needs.
Resource Support: Resource support could be given by teachers working in special schools.
Where necessary, specially trained resource teachers should be appointed, particularly for teaching special skills to children with special needs. Wherever this option is not feasible, long term training of regular teachers should be undertaken.
There are two primary focuses in the orthopedic management strategy for individuals with multiple disabilities: mobility and positioning. Both these goals, of which some aspects may be opposed to one another, are the foundation of the functional and orthopedic prevention measures intending to avoid secondary impairments, deformities and the progressive limitation of motor capacity.
At a young age, various motor training methods are undertaken by a kinesitherapist and a psychomotor therapist, who are relayed by the child's family whenever possible. Generally, they are global methods based on levels of motor development in children (Le Métayer) or on relaxation positions (Bobath) using every moment of the child's daily life as an opportunity to foster mobility and help him find his own motor strategies through the coaching of body movements and playful stimulation. Postures and other more segmental methods may be necessary as the child grows. Special attention should be paid to the training of muscles of the mouth and face aimed at addressing or preventing the eating difficulty that may be present.
Progress in motor control is usually possible and as such, it is critical to preserve the mere motor capacity throughout the child's growth. However, this may become more difficult to achieve with the child growing and getting heavier.
Some children may achieve a more or less balanced spastic gait (stiff legs), and many of them may be able to achieve independent ambulation, yet with some limitations (hesitant or tiring gait, mobility on the ground); others present limited mobility, but are capable of standing for a while with some assistance. This is particularly important when it comes to dressing and transfers. Finally, some children may be able to walk a few steps assisted by an adult.
Manual capacity varies in the same way: clumsy grasp yet still usable, ability to use upper limbs during transfers, weight bearing and positioning in wheelchair, or no ability to grasp, whether this is due to neurological disturbances or lack of propensity to engage in motor activity, or hand stereotypies typical of Rett syndrome. It is thus important to perform a simple functional assessment for each individual regularly that not only takes their weaknesses into consideration, but also their capacities.
Positioning and bracing have two objectives:
The main orientation to be achieved is verticalization, which is the positioning of the individual in a standing or seating position with more or less assistance. This vertical position improves the digestive function and is an attempt to prevent rarefaction of bone (as bone structure cannot be maintained without pressure influencing the blood flow that feeds joints). This position also has an impact on the gaze direction, and thus on the individual's contact with the environment. Various methods are used: to achieve the desired positioning. When it is impossible for the individual to actively achieve the standing position, various standing aids may be used: stand-in tables, static standing frames, molded hip-knee-ankle orthoses (plaster or polypropylene). The former Phelps is no longer in usedl'ancien appareil de Phelps étant de moins en moins prescrit.
Shoe fitting is very important (molded soles, wide opening on the top of the foot, good fitting techniques).
In seating position, the aim is to achieve balance of the pelvis and symmetrical hip abduction in order to help the growth of the hip joint and prevent dislocations and scoliosis. Wide arrays of customized plaster or polypropylene molded seats are used, with or without headrest, and with various support devices. However, these devices are often adjusted too tightly and even when appropriately used, they limit mobility, which leads to their use at various times during the day, alternating assisted and unassisted mobility.
Spinal deformities (scoliosis) occur mainly from the pubertal growth spurt and lead to the use of braces for control—often times bivalve braces with excellent padding of various types. Precautionary measures taken prior to brace fitting and monitoring of the condition of the skin under the brace will increase the individual's tolerance and prevent pressure sores at the brace-skin interface.
Surgery is sometimes needed to prevent deformities. It focuses either on soft tissues (tenotomy, neurotomy) or bones— more or less invasive osteotomies of the femur or pelvis; arthrodesis involving the foot; spinal fusion when the curvature can no longer be controlled by bracing. The latter surgery is risky and requires both psychological and somatic preparation for the individual, the participation of his family and educational team, and rigorous monitoring of the surgical outcomes and of the result achieved compared to recommended indications. No surgical intervention should be considered without a clear justification of the objectives, expected results, risk factors, and care required following surgery.
3.5 Behaviour Problems and interventions.
Most children with multiple disabilities show strange behaviours that are called ‘self-stimulating’ behaviours. Some of these are moving one’s body repeatedly, shaking head side to side, moving fingers in front of eyes, hitting or slapping the ears, swinging in one place and so on. The children mostly do this due to lack of anything else to do. Sometimes it is important for them to continue doing it from time to time as it helps them get some information about the world around them in their own special way. Sometimes these children also show disturbed sleep patterns.
The following list has some ideas and strategies for changing behavior (also known as behavior modifications):