Transforming communities for Inclusion of Persons with Disabilities in preparation for De-Institutionalization

TCI in partnership with International Disability Alliance, Inclusion International, Validity Foundation, Disability Rights Fund, Indonesian Mental Health Association and Center for Inclusive Policy

Persons with mental, intellectual, multiple and psycho-social disabilities, users and survivors of psychiatry and those with intersectional, neurodiverse identities, are still left behind, in the context of human rights and inclusion. While people, especially children and elderly, in the global north face extreme levels of compulsory institutionalization, in countries of the global south, such persons go uncounted, unseen and unheard, face violence in communities and are viewed as a curse from God or products of fate. Social and mainstream media reinforce stereotypes of dangerousness, entrenching public opinion and complicating policy making.

Institutionalisation is a reality in many countries and it’s growing in middle-income countries particularly through new and private institutions. People with psychosocial disabilities and persons with intellectual disabilities are more commonly found in mental asylums, rehab centers, clinics, nursing homes and a variety of care institutions, facing long term confinement, isolation, physical and chemical restraint. Many low-income countries never had the capacity to build care institutions and many people with disabilities are excluded within their own communities: people are shut away in overcrowded, filthy rooms, wards, sheds, cages or animal shelters; and/or subject to shackling. People have no access to social capital, are prone to daily life-threatening risks of malnutrition, long term use of psychiatric drugs, NCDs, infections and death. They live as ‘non persons’, not recognized as persons by law with no access to justice.

Contrary to the CRPD, persons with disabilities face deprivation of liberty that is disability-specific. The most common include involuntary hospitalization in psychiatric facilities, rehabilitation centers, half way homes, placement in other similar closed-door institutions such as ‘beggars’ homes’, internment in forensic psychiatric wards, and other special institutions created under law to detain people, to provide them segregated education or care, including children with disabilities. Whatever the disability, majority of children are found drugged and sedated within many care facilities. Families are pushed and encouraged by professionals to send their children into these institutions using the reasoning of ‘best interest’ and due to lack of community-based support services and inclusive mainstream services. In countries where special laws exist, private institutions have absorbed the constitutional power of ‘deprivation of liberty’, acting in a quasi-state manner by practicing involuntary commitment routinely as an administrative measure.

‘Treatments’ are such that they cannot be distinguished from punishment (e.g. solitary confinement, ECT without consent and direct shock treatment)., Several new forms of institutions have arisen, such as ‘mini-institutions’, smaller in size, but having the same coercive features. All these forms share common characteristics and justifications that stem from historical, colonial, legal and attitudinal barriers compounded by the medical model of ‘mental illness’ or ‘intellectual/cognitive incapacity’: Together these compel the denial of the right to live in the community of the limited public monies available for mental health, governments spend high budgets on these institutions to maintain the infrastructure, while not investing in independent community living.

Due to continued risks of re-institutionalization and trans-institutionalization and a build up of restrictions to community participation, people with disabilities have no access to inclusion in any aspect of development: basic education, basic health care, employment opportunities, social protection schemes of the government for in kind support such as cash transfers, disability pension, support for housing, access to community support systems, access to wellbeing services, etc. During the recent COVID19 pandemic persons with disabilities had no safeguards of safety or emergency health care, facing risk to life and wellbeing.

From segregation to inclusion: A call for De-institutionalization

We have been advocating for the full ‘inclusion’ of persons disabilities since long. DI requires multi- pronged universal strategies which should be adopted by all states’ parties: (1) an enabling legal environment (addressing legal incapacity laws and mental health laws, the two strongest barriers leading to forced institutionalization) and (2) enabling psychosocial ecosystems embedded within open communities and close to where people with disabilities are living to better support all persons with disabilities. Habitats with these 2 preconditions within policies will allow persons with disabilities to live independently in communities, access a variety of services and support systems and live lives on their own terms. The practice of inclusion will however have larger value in inclusion of marginalized persons, persons with disabilities, age-based groups and occupational / indigenous groups which are discriminated traditionally or culturally.