Unit 3: Management of Individuals with High Support Needs

3.1.  Steps involved in planning assessment

3.2.  Coordination of multidisciplinary team members in management of high support needs

3.3.  Working with family

3.4.  Optimal utilization of government supports

3.5.  Documentation, progress monitoring and evaluation













3.1         Steps involved in planning assessment



An assessment plan ensures a project stays focused on intended learning goals and should be developed before the project activities and tasks. Because project tasks allow for broader expression of individual learning, assessment strategies need to be open enough to accommodate a range of learner work, yet focused on expected results.

Students with disabilities are complex learners who have unique needs that exist alongside their strengths. Effective special education teachers have to fully understand those strengths and needs. Thus, these teachers are knowledgeable regarding assessment and are skilled in using and interpreting data. This includes formal, standardized assessments that are used in identifying students for special education services, developing students’ IEPs, and informing ongoing services. Formal assessments such as statewide exams also provide data regarding whether students with disabilities are achieving state content standards and how their academic progress compares to students without disabilities. Teachers are also knowledgeable about and skillful in using informal assessments, such as those used to evaluate students’ academic, behavioral, and functional strengths and needs. These assessments are used to develop students’ IEPs, design and evaluate instruction, and monitor student progress. As reflective practitioners, special educators also continuously analyze the effect and effectiveness of their own instruction. Finally, these teachers are knowledgeable regarding how context, culture, language, and poverty might influence student performance; navigating conversations with families and other stakeholders; and choosing appropriate assessments given each student’s profile.

Assessment means the gathering of information to make critical decisions about a child. A variety of methods are used to gather assessment information, including observations of the child, interviews with the family, checklists and rating scales, informal tests, and standardized, formal tests. Assessment information is useful for identifying the child as eligible for special services, planning instruction, and measuring progress.

Six sequential stages of the assessment process for young children are illustrated in the figure below:

Stage 1: Child-Find/case finding

The initial stage, called "Child-Find", refers to procedures designed to locate those young children who might need early intervention services and programs. This stage is required because many parents do not know that services are available for young children, some parents may not realize that their child has a developmental problem, or the family may deny that a problem exists because of strong cultural beliefs and traditions.

Among the strategies that are used for locating young children in the community who may need special services are:

Stage 2: Developmental screening

Developmental screening is a cursory method for obtaining general information about a child's development and detecting any potential problems. The screening is not intended to be a comprehensive diagnosis, but rather provides a first quick look at a child. Screening procedures are typically used with large groups of children,. Screening tests should be brief, inexpensive, have objective scoring systems that are valid and reliable.

It is important that families understand the purpose of screening procedures and be informed about the results. When the screening indicates that a young child has potential problems, it is critical that the child receives a more comprehensive diagnosis.

Stage 3: Diagnosis

Diagnosis is a more intensive evaluation than screening. Information is obtained through observation, interviews, case history, and informal and standardized tests. The examiners strive to determine the nature of the child's difficulties, the severity of the problem, and the child's strengths and weaknesses. This information becomes the basis for determining eligibility for special education services.

The diagnosis is conducted by members of a multidisciplinary team. For example, if the screening indicates that the child has language difficulties, members of the multidisciplinary team could include a speech/language pathologist; a specialist in hearing, such as an audiologist or otologist, to evaluate hearing loss; and a psychologist to determine how the child's development related to language acquisition. A family interview would provide additional information about the case history, language performance at home, and the primary language of the family. Information collected through the diagnosis leads to decisions about the nature and severity of the problem and assists in planning intervention.

Stage 4: Individual planning of programs and interventions

If the diagnosis indicates there is a need for early intervention, the next stages involves assessment for the planning of programs and interventions. To closely link this stage of the assessment to the actual curricula of the child's early intervention program, curriculum-based or criterion-referenced instruments and procedures are used. The areas considered in the planning process for preschool children include:

Stage 5: Program monitoring

After the child is placed in an intervention program, it is important that the child's progress in monitored frequently. Multiple checks include observations, developmental checklists, and rating scales.Collect data on a regular basis and analyze to determine mastery of targeted skills.

Note progress in meeting goals and objects on the child's Individualized Education Plan (IEP) or Individualized Family Service Plan (IFSP).

Determine the effectiveness of the invention and changes that are needed in the intervention plan.

Stage 6: Program evaluation

It is also important to evaluate the intervention program itself. Program evaluation is objective, systematic procedure for determining progress of children and the effectiveness of the total intervention program. It may be necessary to make needed changes and modifications in the intervention program.




3.2         Coordination of multidisciplinary team members in management of high support needs



Multidisciplinary teams (MDTs) are the mechanism for organising and coordinating health and care services to meet the needs of individuals with complex care needs.

The teams bring together the expertise and skills of different professionals to assess, plan and manage care jointly. Based in the community, and networked with primary care, MDTs are expected to work proactively to support individuals’ care goals.

Through accessing a range of health, social care and other community services, MDTs focus on keeping people well and independent, delivering the right care at home or in the community to prevent unnecessary hospital care.

MDTs consist of practitioners and professionals from health, care and allied disciplines and sectors that work together to provide holistic, person-centred and coordinated care and support.

The composition of MDTs varies depending on delivery models and settings but it may include: GPs, specialist doctors, nurses, physiotherapists, occupational therapists, pharmacists, social workers and, increasingly, representatives of the housing and voluntary sectors. MDTs also often include link workers or care navigators, who can support social prescribing by connecting individuals with local groups and community support services.

A holistic and integrated approach to care and support requires the coordination of multiple interventions and services, built around the complex continuum of people’s needs, personal strengths and desirable outcomes.

MDTs play an important role, bridging professional boundaries and breaking down the barriers of competing cultural and organisational differences. When successful, they enable comprehensive, continuous and seamless care services to be delivered.

Led by a nominated care coordinator or lead, MDTs can ensure significant benefits for service users:

·      joint assessments and care planning, informed by service users’ own goals and decisions

·      better communication and information-sharing across the team and with the service user

·      greater involvement of the service user, or their carers, in decisions about care

·      a single point of access through a key worker or named coordinator

·      rapid access to specialist expertise in the community, including urgent care in a crisis and at transitions of care (e.g. hospital discharge)

·      access to a range of community services that support wellbeing, self-management and prevention (e.g. falls prevention services or home adaptations




3.3         Working with family


Parents of children with an IDD obviously and undeniably experience the same love and joy for their children, but they also have an increased risk of encountering stressors (e.g., high medical costs), anxiety, and depression. Increased rates of stress, anxiety, and depression reported in samples of parents of children with IDD are understandable given the unique and emotionally demanding challenges faced by these families. The level of support that a child with IDD requires differs, in part, according to the nature and severity of the IDD, but the majority of children with IDD require care and supports beyond that provided to typically developing children. For example, by definition, children with IDD present with high support needs in adaptive behavior and functional life activities. Additionally, children with IDD often present with an increased risk of comorbid mental health issues including severe and sometimes life-threatening behavior problems such as aggression, self-injurious behavior, and elopement. Finally, individuals with profound intellectual and multiple disabilities may present with orthopedic impairment, sensory disabilities, and a range of chronic health issues such as seizure disorders, difficulty maintaining core body temperature, and feeding issues.

In the context of parenting, even small daily stressors can adversely affect a family’s ability to cope. Difficulty coping and adjusting to the lifestyle necessary to meet the needs of a child with IDD can occasion the onset of additional threats to the quality of family life. For example, parents of children with IDD may be at increased risk for relationship discord including increased divorce rates. Further, the cost of early intensive intervention services, specialized child care, and the medical bills associated with comorbid conditions, can deplete a family’s financial resources. Finally, specialized child care can be difficult to obtain for working parents with a child with IDD. Therefore, parents of children with IDD are often faced with challenges greater than those faced by parents of typically developing children but have fewer supports and resources (i.e., family support, money, time) available to address those challenges.

Parents of children with significant intellectual disability (i.e., moderate to profound intellectual disability or profound and multiple disability) may benefit from informal (e.g., support groups) and formal (e.g., home-based intervention, functional behavior assessment, group or individualized parent education, respite care, medical device rental) services, and supports to address their child’s needs but may also benefit from learning skills to mediate the impact of caring for a child with a significant disability. Parents have unique influence on their child’s acquisition of new skills through their continual and powerful presence in their child’s life. In addition, parent acquisition of relevant skills (e.g., behavior management strategies) can decrease stressful parent-child interactions during family routines and increase their child’s independence. Moreover, improving parent optimism and sense of self-efficacy in addressing their child’s adaptive behavior needs may improve child and parent outcomes. Research involving parents of children with disabilities has demonstrated the effectiveness of parent-implemented interventions to improve a variety of child outcomes as well as improve parent self-efficacy and well-being.

Professionals seeking to develop intervention programs for parents of children with significant intellectual disability have a large database of evidence-based practices shown to be effective when used by teachers, researchers, and other professionals to improve adaptive behavior domains and decrease challenging behavior. In addition, past reviews of the parent education literature for parents of children with IDD (e.g., autism spectrum disorder [ASD] and other developmental disorders, intellectual disability) are numerous and have included well-designed systematic reviews of interventions. Unfortunately, few studies included in the aforementioned literature reviews have focused specifically on parents of children with significant intellectual disability.

Due to the unique needs of children with significant intellectual disability, parents of these children have an increased need for supports, educational programming, and interventions to assist them in facilitating and nurturing their child’s development, managing the impact of chronic stressors, and buttressing parent and family well-being. Although evidence-based practices for improving outcomes for children with significant intellectual disabilities and for training parents in skill acquisition and behavior management strategies are relatively well-researched, there is nonetheless a need to examine the utility and effectiveness of these strategies when used by parents of children with intellectual disability in family homes and in the community.

Most children with multiple disabilities will need some level of help and support throughout their lives. How much support a child needs will depend on the disabilities involved. A child with mild multiple disabilities may only need intermittent support (meaning, support is needed every now and again, or for particular tasks). Children with multiple, more severe disabilities are likely to need ongoing support.

Support in major life activities | When considering what supports a child needs, it’s helpful to think about major life activities. “Major life activities” include activities such as:



3.4         Optimal utilization of government supports



The Department of Empowerment of Persons with Disabilities was carved out of the Ministry of Social Justice and Empowerment on 12.05.2012 as Department of Disability Affairs to ensure greater focus on policy matters to effectively address disability issues and to act as a nodal Department for greater coordination among stakeholders, organizations, State Governments and related Central Ministries. According to the Notification dated 14.05.2016 the Department has been renamed as Department for the Empowerment of persons with Disabilities (Divyangjan) (DEPwD(D)).

The disabled are eligible for the following welfare schemes from the government:

1.     Disability pension/unemployment pension

2.     Disabled person's scholarship

3.     Insurance scheme for the mentally challenged

4.     Adhara scheme helping to set up small shops

5.     Telephone booth

6.     Free education up to 18 years

7.     Free legal aid

8.     Aids and appliances (for multiple disabilities)

9.     3% Job reservation (only cerebral palsy included)

10.Concessional bus passes

11.Railway concession

Providing Access to Differently-abled persons

It has been felt that differently-abled persons need special arrangements in the environment for their mobility and independent functioning. It is also a fact that many institutes have architectural barriers that disabled persons find difficult for their day-today functioning. The colleges are expected to address accessibility related issues as per the stipulations of the Persons with Disabilities Act 1995, and ensure that all existing structures as well as future construction projects in their campuses are made disabled friendly. The institutes should create special facilities such as ramps, rails and special toilets, and make other necessary changes to suit the special needs of differently-abled persons. The construction plans should clearly address the accessibility issues pertaining to disability. Guidelines on accessibility laid out by the office of the Chief Commissioner of Disabilities.

Providing Special Equipment to augment Educational Services for Differently abled Persons

Differently-abled persons require special aids and appliances for their daily functioning. These aids are available through various schemes of the Ministry of Social Justice and Empowerment. In addition to the procurement of assistive devices through these schemes, the higher education institute may also need special learning and assessment devices to help differently-abled students enrolled for higher education. In addition, visually challenged students need Readers. Availability of devices such as computers with screen reading software, low-vision aids, scanners, mobility devices, etc., in the institutes would enrich the educational experiences of differently-abled persons. Therefore, colleges are encouraged to procure such devices and provide facility of Readers for visually challenged students.

Disability leads to significant socio-occupational dysfunction. Though initial hurdles due to disability measurement have been crossed, disability benefits are still elusive to the vast majority of the disabled. Proper awareness and education will go a long way in reducing the stigma and help in the effective utilization of benefits. Assessing the utilization of benefits assumes importance in this direction.



3.5         Documentation, progress monitoring and evaluation



Once an assessment plan has been implemented and data has been collected, it is time to further consider the various requirements and other options for reporting, or more generally, sharing the assessment information. Making assessment reports available to stakeholders is a way to increase transparency of the evidence-based decision-making process.

An assessment report is essentially an extension of the assessment plan. Sometimes departments or programs use one document that serves as both the plan and the report. The majority of the document is completed during the planning process, and once data has been collected, reviewed, and discussed, the reporting components are then completed. An assessment report should accomplish the following:

The assessment plan for the next year should reflect aspects of the assessment report from the previous year, as assessment is a systematic and continuous cycle and is the mechanism (or "means" to) for improving educational practices, processes, and policies (the "end").

In addition to assessment reports, there is a variety of other ways to share assessment information with different audiences, including websites, brochures, presentations, and social media. In particular, finding ways to share assessment results with students contributes to their increased understanding of why they are asked to participate in assessment and how they benefit from it.