This resource explores the concept of high support needs among persons with disabilities (PwDs) and highlights the critical importance of recognizing and addressing their diverse requirements in an inclusive manner. It outlines common misconceptions, barriers to inclusion, and practical steps that can be taken by service providers and policymakers to enhance quality of life and participation for individuals with high support needs.

The document also presents a rights-based framework, emphasizing person-centered support, the role of families and caregivers, and the need for systemic change in service delivery. It is a useful guide for anyone working towards building equitable support structures and fostering meaningful inclusion for all.

Introduction

Persons with Disabilities (PwDs) with “High Support Needs” are individuals who may require ongoing intensive support to make independent or informed decisions to access and participate in the areas such as education, employment, family and community life. And where their assessment shows a significant developmental delay including a significant cognitive delay and lack of ability to use words or conventional communication methods to communicate. It may include Persons with Deafblindness (PwDbs) who:

• Have severe communication impairment and may require augmentative systems such as gestures, sign languages, pictures/embossed pictures, finger spelling, etc.
• Require significant support for social interaction with peers and adults.
• Have physical disabilities, with a significant cognitive delay and require support for mobility as well home based modifications to facilitate mobility within the home environment.
• Exhibit extreme to severe challenging behaviour with significant and complex health care needs.
• Experience significant difficulty processing sensory information from the environment there by requiring significant support for self-help and personal care.

Persons with Deafblindness (PwDb) with complex physical, developmental or multiple disabilities need a lot of support because other people may find their behaviour very challenging and they could be at risk of hurting themselves or other people. Keeping in mind the spirit of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD}, the state needs to promote the principles of empowerment regarding consent and decision making.

Persons with benchmark disabilities are defined as those with at least 40% of any of the 21 disabilities listed in Rights of Persons with Disabilities (RPWD) Act. PwDb having high support needs are those who are certified as such under section 58(2) of the Act. It is provided that a PwDb with benchmark disability who consider him/herself to be in need of high support, he/she or any other person or organization in his behalf may apply to the authority appointed by the Government for the same and the authority shall take steps to provide support accordingly (Sec 38). However, the PwDb would have the right to alter, modify, or dismantle the support system and in case of conflict of interest, the supporting person would withdraw from providing the support [sec 13(4&5}].

Requirement of Assessment for High Support

The Central Government Rules, as per Section 100 (f) of the Act, contains the guidelines for the composition of the Board and manner of Assessment for people with high support      needs. The Central Government has notified the RPWD (Amendment) Rules, 2018 specifying the composition of the Assessment Board and the manner of assessment of high support needs vide notification dated 8th March 2019. Now the State Governments are required to take appropriate actions accordingly as follows:

1. As per Section 38 (1) of the Act, any person with benchmark disability, who considers himself to be in need of high support, or any person or organisation on her or his behalf, may apply to an authority, to be notified by the appropriate Government, requesting to provide high support.

• On receipt of an application under sub-section (1), the authority shall refer it to an Assessment Board consisting of such Members as may be prescribed by the Central Government.

• The Assessment Board shall assess the case referred to it under sub-section (1) in such manner as may be prescribed by the Central Government and shall send a report to the authority certifying the need of high support and its nature.

• On receipt of a report under sub-section (3), the authority shall take steps to provide support in accordance with the report and subject to relevant schemes and orders of the appropriate Government in this behalf.

We have to now ensure that the State governments constitute an Assessment; Board at the earliest to certify PwDb with high support; needs

After certification from the Assessment Board only they will be eligible for any support under this provision.

We need to promote, as a fundamental human right, the involvement of all PwDbs in all aspects of decision making, and firmly consider that doing so improves the quality of life. Due to the high support needs of PwDbs, often families, guardians or- in the case of a child or young person – those with ‘parental responsibility’, will usually be the substitute consent provider on their behalf. In order to create more choice and control and equal opportunities in PwDb lives, the State must:

• Ensure PwDs with high support needs are included in planning, using all possible methods to communicate and find out what they are good at and what they want.
• Train parents and staff to help them feel confident about including PwDb in decision making.
• The state must allocate extra funds for Parent’s Associations, Disabled Person Organisations (DPOs) and self-advocacy groups extra funds to help them include everyone.
• Make sure that PwDb are included in education, leisure, work, transport and housing opportunities.