Parents’ associations of persons with intellectual disabilities seek inclusive benefits, urge state support for lifelong care

 

Pune : Parents, caregivers and disability experts on Saturday urged that persons holding temporary disability certificates, including those with intellectual disabilities and autism, be included within the ambit of government schemes, noting the complex and evolving nature of such conditions and the challenges faced by affected individuals and their families.

The appeal came at a consultation organised by the National Centre for Promotion of Employment for Disabled People (NCPEDP) in collaboration with Parivaar, a national confederation of associations of parents of people with intellectual disabilities and other high support-needs disabilities. The consultation brought together stakeholders from across Maharashtra to deliberate on the broader issue of state-supported residential care and long-term security for persons with intellectual disabilities.

Speaking at the consultation, Arman Ali, Executive Director of NCPEDP, said excluding holders of temporary disability certificates from government benefits raises serious concerns. “Excluding temporary certificate holders is a fundamental violation of Article 14 (Equality before Law). It creates an arbitrary subclass of persons with disabilities, individuals recognised by the State as having at least 40% disability, yet denied the means to address it. This is especially harsh for those with intellectual disabilities. When the State issues a ‘temporary’ status for what is often a lifelong neuro-developmental condition, families are forced into a cycle of repeatedly proving disability. Administrative hurdles must not become barriers to constitutional rights. A valid disability certificate, irrespective of its expiry date, should ensure full access to benefits,” he said.

The discussions followed a Government Resolution dated March 27, 2026, which states that only individuals holding permanent disability certificates will be eligible for benefits under government schemes, while those with temporary certificates will not qualify. Participants noted that such provisions could inadvertently exclude a section of persons with disabilities who require continued support and emphasised that policies should remain aligned with the inclusive spirit of the Rights of Persons with Disabilities Act, 2016.

A key concern raised during the consultation was ensuring continuity of care for persons with intellectual disabilities beyond the lifetime of their parents or primary caregivers. Stakeholders observed that in the absence of a structured, state-supported residential ecosystem, many individuals remain vulnerable to insecurity, limited access to services and social exclusion.

Participants called for greater state involvement in supporting residential facilities, including sponsoring a proportion of existing centres to improve affordability and access.

They noted that persons with intellectual disabilities and Autism Spectrum Disorder typically live in three ways: with their families where parents or relatives act as primary caregivers; in group homes; or independently with community support. Across all these arrangements, participants emphasised the need for stronger government support to ensure affordability, accessibility and continuity of care.

The discussion also highlighted the need to expand the scope of the Mahatma Phule Arogya Yojana to better address healthcare and long-term support needs.

There was broad agreement on integrating residential care requirements into development planning, including allocation of land and upgrading facilities with the participation of parent associations. Suggestions also included exploring provisions for children with disabilities under the Antyodaya Scheme, establishing an SOS mechanism for abandoned persons with disabilities, and strengthening training and capacity-building for caregivers and service providers.

Parivaar, a national confederation of more than 310 parent associations and civil society organisations across 31 states, continues to advocate for stronger support systems and the rights of persons with intellectual and developmental disabilities, including autism, cerebral palsy and multiple disabilities.

The consultation concluded with stakeholders calling for a collaborative roadmap to guide future policy decisions in Maharashtra, with a focus on ensuring lifelong care, dignity and security for persons with intellectual disabilities.

 The consultation was held at The Pride Hotel in Pune .