CITIZEN DATA PROJECT:�INVESTIGATE, DOCUMENT, CHALLENGE �INSTITUTIONS FOR CHILDREN OR ADULTS WITH DISABILITIES

SESSION 1: STRATEGIC CONSIDERATIONS

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Eric Rosenthal, Executive Director�Disability Rights International

September 10, 2026

INTRODUCTION:�DISABILITY RIGHTS INTERNATIONAL (DRI)

DRI staff and trainers:

• Laurie Ahern, President
• Eric Rosenthal, Founder and Executive Director
• Priscila Rodriguez, Litigation Director
• Dragana Ciric, Development and Strategic Partnerships
• Lisbet Brizuela, DRI-Mexico
• Halyna Kurylo, DRI-Ukraine

Guest experts:

• Silvia Quan, former CRPD Committee & Colectivo Vida Independiente, Guatemala
• Pamela Molina, Deaf Overcoming Violence through Empowerment (DOVE)

Thanks to the International Disability Alliance and the Lumos Foundation for program support.

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GLOBAL EXPERIENCE �DISABILITY RIGHTS INTERNATIONAL (DRI)

• DRI has documented abuses in institutions 48 countries of the Americas, Africa, Europe, and Asia
• Rosenthal draws on lessons learned from:
• Documenting torture in detention in West Bank/Gaza for Human Rights Watch & Physicians for Human Rights;
• Court ordered documentation at St. Elizabeth’s Hospital, Washington, DC;
• Dozens of countries on behalf of DRI;
• Petition for UN CRPD Inquiry under CRPD Optional Protocol based on severe and systemic abuses in Mexico’s segregated system of institutions.

See www.DRIadvocacy.org for training resources, reports, and global press coverage.

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OVERVIEW OF WEBINAR SERIES

• Part 1: Strategic Considerations (September 10)
• Part 2: Mechanics of investigations & obtaining access (November 10)
• Part 3: Children’s institutions & problem solving (December 11)

Parts 2 & 3 by application only – application shared here/sent to all participants

Contribute to survey on challenges to monitoring and need for skills development: https://forms.gle/pUF1fqeW5xWFrBrD6

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�DRI RESOURCES AND TRAINING TOOLS

Resources posted on DRI website www.DRIadvocacy.org

• DRI reports from around the world;
• UN Inquiry report on Mexico’s severe and pervasive segregation of people with disabilities;
• Monitoring tools such as WHO Quality of Rights & WHO mental health training curriculum

This webinar series addresses what’s left out of the WHO toolkit: how to monitor conditions and advocate for rights in a challenging environment.

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WHY ARE INSTITUTIONS A CONCERN:�A CORE PROTECTION OF INTERNATIONAL HUMAN RIGHTS LAW

UN Convention on the Rights of Persons with Disabilities, article 19:

States Parties to this Convention recognize the equal right of all persons with disabilities to “live in the community with choices equal others” and to facilitate “full inclusion and participation in the community.”

• Applies to all children and adults with disabilities. Does not permit some people to be left behind in institutions, even with high support needs;
• Requires governments to invest in community services not refurbish institutions

Core strategic challenge: stop abuse and protect lives while promoting the right to full community inclusion.

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WHY IS CITIZEN DATA NEEDED?�BEHIND CLOSED DOORS & OFF THE GRID

Numbers and conditions of millions of people unknown because:

• Children and adults are segregated from society;
• Cut off from family friends and community;
• Under guardianship, denied access to choices, control, access to justice;
• Little funding for independent advocacy & monitoring of institutions;
• Off the grid: denied access to telephone, email, internet.

RESULT:

• Governments cannot be held accountable
• Effectiveness of policies and programs cannot be evaluated

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WHY IS CITIZEN DATA NEEDED?�OFFICIAL STATISTICS NOT RELIABLE

No single authority or ministries have details or responsibility for:

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• Orphanages & “family-type homes”
• Psychiatric facilities & psych wards
• Social care and rehab centers
• Migrant detention centers.
• Unregistered facilities

• Boarding Schools
• Private facilities
• Nursing homes
• Small group homes
• Trafficking victims/forced labor centers

• Children’s “villages”
• Religious facilities/prayer camps
• Substance abuse “treatment”
• Home isolation

See CRPD General Comment No. 5, para. 15

Consider people with disabilities in criminal justice systems:

• Prisons

• Jails

• Juvenile Detention Centers

WHY IS CITIZEN DATA NEEDED?�OFFICIAL DATA CANNOT BE TRUSTED

• Data fabricated to meet performance goals;
• Special interests, labor unions, professional associations protect their authority and control;
• Authorities seek to avoid public accountability;
• Cover for official or private corruption;
• Services run by organized crime & traffickers;
• Well-meaning officials, staff, patients, journalists fear reprisals for disclosure;
• International development groups and charities milked for funds. Given common lack of support for disability participation, they are not likely to learn about limitations of their work.

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WHY IS CITIZEN DATA NEEDED?�EVEN THE EXPERTS CAN’T AGREE

Conflict of law CRPD vs. CRC: Is a group home an institution?

See Eric Rosenthal, “The Residential Care Controversy” The International Journal of Disability and Social Justice 1, no. 1 (2021): 95–117. https://doi.org/10.13169/intljofdissocjus.1.1.0095.

UN CRPD General Comment No. 5: ‘[f]or children, the core of the right to be included in the community entails a right to grow up in a family’ (CRPD Committee, 2017, para. 37). The CRPD Committee (2017, para. 16(c)) explains that:

UN Guidelines for the Alternative Care of Children: [R]esidential care facilities and family-based care complement each other in meeting the needs of children, para. 23

Compliance with international law requires compliance with CRPD

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WHY IS CITIZEN DATA NEEDED?�DEFINITION OF AN INSTITUTION UNDER THE CRPD

For children, a residence – regardless of size – that:

• Denies children the right to live and grow up with a family or extended family
• A committed adult caregiver, not inter-changeable staff
• CRPD Committee says:  "Large or small group homes are especially dangerous for children, for whom there is no substitute for the need to grow up with a family. ‘Family-like’ institutions are still institutions and are no substitute for care by a family.”

For adults a residence – regardless of size – that have defining elements, including:

• Isolates and segregates people from life in the community;
• Denies control and choice;
• Creates rigidity routines irrespective of personal will and preferences.

See UN CRPD General Comment No. 5 para 16; Guidelines on Deinstitutionalization para. 14

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WHAT CAN BE DONE WITH CITIZEN DATA?

Knowledge is in itself power.

-- Sir Francis Bacon

Power concedes nothing without a demand;

it never did and it never will.

-- Frederick Douglass

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CITIZEN DATA:�HOW CAN DOCUMENTATION BE USED?

• Seek better government reporting and transparency on institutionalization;
• Demand government accountability for abuse;
• Identify corruption, mismanagement, criminal activity;
• Conduct media campaigns to educate the public;
• Inform policy-makers & legislators to improve laws and policies;
• Evaluate and influence international development assistance;
• Champion individual cases;
• Conduct strategic litigation to end systemic abuse;
• Obtain documentation needed for asylum and protection from deportation (more on this later);
• Make better institutions? NO! (more on this later);
• Train, sensitize, and empower activists.

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CITIZEN DATA EMPOWERS CITIZENS:�PARTICIPATION AS A RIGHT

• Whoever has the data, shapes the discussion
• Documentation puts citizens in the driver’s seat to challenge government and professional authority
• There is nothing like personally witnessing conditions

CRPD Article 4(3) “In the development and implementation of legislation and policies to implement the present Convention…States Parties shall closely consult with and actively involve persons with disabilities….”

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CITIZEN DATA:�ACCESS TO INSTITUTIONS IS A RIGHT

• Obligation to monitor by independent authorities: CRPD Article 16 “all facilities and programmes designed to serve persons with disabilities are effectively monitored by independent authorities.”
• Obligation to engage civil society: CRPD Article33(3) “Civil society, in particular persons with disabilities and their representative organizations, shall be involved and fully participate in the monitoring process.”
• CRPD General Comments #5 & #7 call for monitoring by organizations of persons with disabilities and including people detained in institutions.

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CRPD GUIDELINES ON DEINSTITUTIONALIZATION�RIGHT TO ACCESS

• States Parties should ensure that article 33….include participation from OPDs, have unrestricted access, physical and otherwise, to institutions, documents, and information. para. 131
• All monitoring mechanisms should be allowed to freely investigate conditions and human rights violations within public and private institutions. para. 132
• Privacy and confidentiality cannot be used to prohibit independent monitoring. para. 132
• The ability to obtain, store, and publish information about the conditions in institutions should be protected. Photographic and video documentation of conditions are critical to complement and corroborate the factual findings of human rights monitors.
• Monitoring continues until all institutions closed and not suspended during emergencies.

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DENIAL OF ACCESS:�THE GREATEST CHALLENGE TO RIGHTS ENFORCEMENT

DENIAL OF ACCESS IS THE NORM AND NOT THE EXCEPTION

• 67% of survey members experienced challenges to access.

Webinar #2 will address access challenges: how to monitor given limited access

• Please share your experiences in survey.
• We are collecting data to ask CRPD Committee for stronger general comments.

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DRI VIDEO: �FEDERICO MORA CASE IN GUATEMALA

• Video takes you inside the facility; no report can fully communicate what you must see and experience to understand;
• Warning: Graphic images are difficult to see;
• Controversy over use of video; we will address these issues in Webinar 2;
• We do not mean to suggest that you must use video; you must choose what will be most effective to meet your objectives;
• The video raises the core issue that we’ve referenced: whether institutions can or should be fixed up;
• This video shows how documentation is being used not to fix up but to close down institutions.

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DRI VIDEO FOLLOW-UP

• Your questions: I wish we had time for an open discussion because our video always generates lots of new ideas, questions, concerns.
• Please include your comments in the chat below and we will address them over our next two webinars.

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PANEL OF DRI STAFF & EXPERTS�STRATEGIC CONSIDERATIONS AND OVERCOMING CHALLENGES

• Dragana Ciric: What does international law say about investing in institutions?
• Silvia Quan: What do you do when government authorities impair access?
• Lisbet Brizuela: What area the challenges of organized crime?

What are the challenges of addressing unregistered facilities?

• Priscila Rodriguez: How can peers be engaged to document abuses?
• Pamela Molina: How do you protect deaf individuals and language minorities?
• Halyna Kurylo: What are the challenges of documentation in wartime conditions?

Does international involvement guarantee better access?

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CRPD LIMITS ON FUNDING INSTITUITONS �WITH ONE EXCEPTION

Improvement of institutions is not progressive enforcement of article 19

• New funding likely to perpetuate and not end segregation;
• Governments under an obligation to plan for and fund deinstitutionalization.

Exception: Protecting life and physical safety.

• No new long term care residential institutions may be built by States parties, nor may old long term care residential institutions be renovated beyond the most urgent measures necessary to safeguard residents’ physical safety. CRPD General Comment #5, para. 49.

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CONCLUSIONS AND NEXT STEPS

• Application will be sent out for:

Webinar 2: Mechanics of access and documentation

Webinar 3: Children’s institutions & problem solving from participant questions

• Please fill out survey if you haven’t already.
• Please share documentation.
• Let us know if we can share contact of your organization & documentation in global documentation hub.
• Let us know if your interested in training on asylum declarations.

START DOCUMENTING! And let us know how it goes.

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