All people have the right to make decisions about their own lives, to be included in community, and to receive support that respects their autonomy and dignity. This page centers the expertise of self-advocates with intellectual and developmental disabilities.
Intellectual and developmental disabilities (IDD) include conditions present from birth or early childhood that affect cognitive development, adaptive skills, or both. People with IDD have fought for decades for the right to live, work, learn, and make choices in their communities — not in institutions or segregated settings.
¶ Understanding Intellectual and Developmental Disabilities
¶ What Are Intellectual and Developmental Disabilities?
Developmental disability is a broad category of conditions that:
- Begin before age 22
- Are likely to continue throughout life
- Result in substantial limitations in major life activities
Intellectual disability specifically involves:
- Significant limitations in intellectual functioning (reasoning, learning, problem-solving)
- Limitations in adaptive behavior (everyday social and practical skills)
- Onset during developmental period
Not all developmental disabilities involve intellectual disability. For example, autism is a developmental disability, but many autistic people do not have intellectual disability.
People with intellectual and developmental disabilities have been at the forefront of fighting for their rights. Key principles from the self-advocacy movement:
"Nothing About Us Without Us": People with IDD must be involved in decisions affecting their lives.
"Label Jars, Not People": People are more than diagnoses.
Presuming competence: Assume people understand and can participate, then provide supports — rather than assuming incompetence.
Person-first vs. identity-first: Many people with IDD prefer person-first language ("person with a disability"), while some prefer identity-first ("disabled person"). Ask individuals their preference.
¶ Conditions and Experiences
Intellectual disability (formerly called "mental retardation," a term now considered offensive) affects how quickly and easily someone learns and applies new information.
Understanding intellectual disability:
- IQ tests measure only certain kinds of intelligence
- Adaptive functioning (daily living skills) matters as much as IQ
- Support needs vary enormously person to person
- People with intellectual disability can learn, grow, and contribute throughout life
Support levels: Formerly described as "mild, moderate, severe, profound" — now often described by support needs (intermittent, limited, extensive, pervasive).
Important: Intellectual disability means learning differently and potentially needing support — not inability to learn, have meaningful lives, or make choices.
Genetic condition caused by an extra chromosome 21 (trisomy 21). Most common chromosomal cause of intellectual disability.
Understanding Down syndrome:
- Wide range of abilities and support needs
- Many people with Down syndrome live independently, work, and have relationships
- May have associated health conditions (heart conditions, thyroid issues, hearing/vision)
- Life expectancy has increased dramatically with medical advances
Self-advocates: People with Down syndrome are increasingly visible advocates, business owners, actors, and more.
Typical healthcare: Pediatric and adult specialists following Down syndrome health guidelines, regular screenings for associated conditions.
Organizations:
- Self Advocates Becoming Empowered (SABE) — led by people with developmental disabilities
- National Down Syndrome Society (NDSS)
- Down Syndrome Association (UK)
- Global Down Syndrome Foundation
Cerebral palsy (CP) is a group of disorders affecting movement, muscle tone, and posture caused by damage to the developing brain. CP is a developmental disability, though most people with CP do not have intellectual disability.
Understanding CP:
- Highly variable — some people have mild symptoms, others significant
- Motor function is affected; cognition may or may not be
- Not progressive but effects may change over time
- Some people use AAC (augmentative and alternative communication)
See also: Physical Disabilities for more on CP.
Genetic condition causing intellectual disability and often autism. Most common inherited cause of intellectual disability.
Understanding Fragile X:
- Range of effects from mild to significant
- More common and typically more severe in males
- Often co-occurs with autism, ADHD, anxiety
- May include physical features and health concerns
Organizations: National Fragile X Foundation
Range of effects from prenatal alcohol exposure.
Understanding FASD:
- May include intellectual disability, learning differences, behavioral challenges
- Physical features may or may not be present
- Often underdiagnosed
- People with FASD can and do live successful lives with appropriate support
Important note: Stigma around FASD often harms both individuals with FASD and birth mothers. Focus on support, not blame.
Genetic condition affecting multiple systems.
Understanding Prader-Willi:
- Intellectual disability (variable)
- Distinctive behavioral characteristics including intense food focus
- Requires specific environmental supports
- People with PWS can live fulfilling lives with appropriate support
Organizations: Prader-Willi Syndrome Association
Genetic condition causing developmental and medical effects.
Understanding Williams:
- Often includes intellectual disability
- Distinctive personality traits (very social, musical interests common)
- Associated health conditions (heart, kidneys)
- Strong verbal abilities common
Organizations: Williams Syndrome Association
Many other conditions may involve intellectual or developmental disability, including: Rett syndrome, Angelman syndrome, some forms of epilepsy, effects of brain injury, and many rare genetic conditions.
If your condition isn't listed: The general guidance on this page still applies. Consider contributing information.
Services systems:
- State developmental disability agencies (every state has one)
- Medicaid waiver programs: Home and community-based services
- Vocational rehabilitation: Employment support
- Centers for Independent Living: Peer-based support
Rights and protections:
- ADA: Prohibits discrimination
- Olmstead decision: Right to community living
- IDEA: Educational rights
- Section 504: Accommodations
Benefits:
- SSI: Income for people with disabilities who haven't worked
- SSDI: For those who have worked (or SSDI on parent's record in some cases)
- Medicaid: Healthcare coverage
- ABLE Accounts: Tax-advantaged savings
- State supplemental benefits vary
Waiting lists: Many states have long waiting lists for services. Advocacy often needed.
Organizations (self-advocate led):
- Self Advocates Becoming Empowered (SABE)
- The Arc (chapters in most areas; many have self-advocacy groups)
- Autistic Self Advocacy Network (ASAN)
- State developmental disability councils
Services:
- Provincial developmental services systems
- Community living organizations
- Passport Program (Ontario) and similar provincial programs
- Supported living and employment programs
Benefits:
- Provincial disability assistance programs
- Canada Pension Plan Disability (for some)
- Tax credits
- See Canada Benefits
Organizations:
- People First of Canada — self-advocacy
- Inclusion Canada (formerly CACL)
- Provincial People First chapters
Services:
- Adult social care through local authorities
- Personal budgets and direct payments
- Supported living options
- Day services and community participation
Rights:
- Mental Capacity Act: Presumption of capacity; supported decision-making
- Care Act: Assessment and eligibility for services
- Equality Act: Disability discrimination protection
Benefits:
- Personal Independence Payment (PIP)
- Universal Credit or Employment and Support Allowance
- Housing benefits
- See UK Benefits
Organizations:
- People First groups across UK — self-advocacy
- Mencap — large charity (some self-advocacy involvement)
- Inclusion London
- Learning Disability England
NDIS:
- National Disability Insurance Scheme covers many supports
- Includes support coordination, therapy, supported living, employment support
- Plan management options: self-managed, plan-managed, or NDIA-managed
- See Australia Benefits
Organizations:
- Inclusion Australia
- People with Disability Australia (PWDA)
- State-based self-advocacy organizations
UN CRPD relevant articles:
- Article 12: Equal recognition before the law (supported decision-making)
- Article 19: Living independently in community
- Article 24: Inclusive education
- Article 27: Work and employment
Many countries are working to move away from institutions toward community living. Progress varies significantly.
Inclusion International: Global network of organizations for people with intellectual disabilities.
See International Rights.
¶ Autonomy and Decision-Making
People with intellectual and developmental disabilities have the right to make decisions about their own lives: where to live, how to spend time, who to spend time with, what to eat, what to do for work, whether to have relationships.
Supported decision-making: Rather than taking decisions away (guardianship), supported decision-making helps people make their own choices with assistance. This approach is increasingly recognized as the best practice.
Guardianship/Conservatorship:
- Courts can remove decision-making rights — this is serious and should be last resort
- Limited guardianship (for specific areas only) preferred over full guardianship when any guardianship is needed
- Alternatives to guardianship should always be considered first
- Supported decision-making, powers of attorney, representative payees can often provide needed support without removing rights
Presume competence means starting from the assumption that people understand and can participate, then providing supports — rather than assuming incompetence.
This applies to:
- Communication (assume people understand even if they don't speak)
- Education (assume people can learn)
- Decision-making (assume people have preferences and can make choices)
- Employment (assume people can work with appropriate support)
Not everyone uses spoken language. That doesn't mean they can't communicate.
Augmentative and Alternative Communication (AAC):
- Symbol boards and books
- Sign language or modified signs
- Speech-generating devices
- Apps on tablets and phones
- Any combination that works
Key principles:
- Behavior is communication
- Everyone deserves access to communication
- AAC should be available always, not just in therapy
- Assume people have things to say
See Communication Access & AAC.
Plain language makes information accessible:
- Simple, clear sentences
- Common words
- Organized logically
- Visual supports when helpful
- Key points highlighted
Plain language benefits everyone, not just people with IDD.
Inclusion means learning alongside peers without disabilities, with appropriate supports — not segregated "special" classes.
In the US:
- IDEA requires free appropriate public education
- Least Restrictive Environment (LRE) principle favors inclusion
- IEPs (Individualized Education Programs) specify supports
- Transition planning for post-school life
Benefits of inclusion:
- Higher academic achievement
- Better social outcomes
- Higher expectations lead to greater achievement
- Benefits all students, not just those with disabilities
Challenges:
- Many schools still segregate students
- Inclusion requires adequate support
- Advocacy often needed to secure appropriate services
See K-12 Education, Early Intervention, Transition to Adulthood.
People with IDD have the right to work in competitive integrated employment — real jobs, real wages, real workplaces.
Types of employment:
- Competitive integrated employment: Jobs in the community at minimum wage or higher
- Customized employment: Jobs created based on individual strengths and employer needs
- Supported employment: Jobs with ongoing support from job coaches
- Self-employment: Running one's own business
Sheltered workshops and subminimum wage:
- Some programs pay below minimum wage under Section 14(c) certificates (US)
- Self-advocates and disability organizations are working to end this practice
- "Real work for real wages" is the goal
- Transition to competitive employment is possible
Getting support:
- Vocational rehabilitation agencies
- Supported employment providers
- Customized employment specialists
- State developmental disability agencies
See Job Searching with a Disability, Supported Employment & Voc Rehab, Workplace Accommodations.
Olmstead (US Supreme Court, 1999): Unjustified institutionalization is discrimination. People have the right to live in the community.
Community living options:
- Own home or apartment (with or without support)
- Living with family
- Shared living arrangements
- Supported living programs
- Host home/family care
What community living looks like:
- Choosing where to live and with whom
- Control over daily schedule
- Making decisions about your life
- Having relationships
- Being part of neighborhood and community
What it's NOT:
- Group homes with institutional rules (though some group homes are better than others)
- Being isolated
- Having no choice or control
See Housing & Independent Living, Independent Living Philosophy, Group Homes & Institutions.
People with IDD face significant healthcare disparities:
- Shorter life expectancy
- Preventable conditions going untreated
- Communication barriers in healthcare settings
- Diagnostic overshadowing (symptoms attributed to disability, not investigated)
- Lack of provider training on IDD
Advocating for good healthcare:
- Bring support person if helpful
- Use communication tools if needed
- Request longer appointments
- Ask for plain language explanations
- Don't accept "it's just part of your disability" without investigation
- Know that people with IDD deserve full healthcare, not just disability-related care
Finding providers:
- Some areas have specialized clinics for adults with developmental disabilities
- University medical centers may have more experience
- Ask other families and self-advocates for recommendations
See Accessible Healthcare, Healthcare Rights.
¶ Relationships, Sexuality, and Parenting
People with IDD have the same rights to relationships, sexuality, and parenting as anyone else.
Relationships:
- Friendships, dating, marriage — all are possible and meaningful
- Support may be needed to meet people and navigate relationships
- Isolation is a significant problem — building social connections matters
Sexuality:
- People with IDD are sexual beings with the right to sexual expression
- Sex education must be accessible and appropriate
- Consent education is important (both understanding consent and recognizing abuse)
- Support for healthy relationships, not prevention of all relationships
Parenting:
- Parents with IDD can be successful parents
- May need accessible parenting information and support
- Child welfare system disproportionately removes children from parents with disabilities
- Discrimination in custody and adoption is illegal but happens
See Dating & Relationships, Parenting with a Disability, Sexuality & Reproductive Health.
¶ Safety and Abuse Prevention
People with IDD experience abuse at much higher rates than general population:
- Physical abuse
- Sexual abuse
- Financial exploitation
- Neglect
- Emotional abuse
- Staff-to-resident abuse in residential settings
Reducing risk:
- Education about abuse, consent, and rights
- Multiple trusted people to report to
- Independent oversight of group settings
- Community living (isolation increases risk)
- Self-advocacy skills
- Reporting mechanisms that work
If you're experiencing abuse:
- Tell someone you trust
- Contact disability rights organization
- Adult Protective Services (in US)
- Police if appropriate
- See Abuse, Neglect & Exploitation
Race and IDD:
- BIPOC people with IDD face compounded discrimination
- Disparities in diagnosis, services, and outcomes
- Criminal justice system disproportionately harms BIPOC people with IDD
Gender and IDD:
- Women with IDD face higher rates of abuse
- Reproductive rights have been violated (forced sterilization)
- Gender identity and expression are rights for people with IDD too
LGBTQ+ and IDD:
- LGBTQ+ people with IDD exist and deserve support
- Some people with IDD are questioning or exploring identity
- Access to affirming support may be limited
Poverty and IDD:
- Poverty is common due to employment discrimination and low benefits
- Intersects with housing instability, food insecurity
- Benefit rules often trap people in poverty
See Intersectionality section.
If your family member is a child:
- Presume competence — start with high expectations
- Include them in community activities
- Provide communication access
- Begin self-advocacy education early
- Plan for transition to adulthood (start by age 14-16)
- Connect with other families AND with self-advocates
If your family member is an adult:
- Respect their autonomy and choices
- Don't speak for them when they can speak for themselves
- Support their relationships and independence
- Learn about supported decision-making alternatives to guardianship
- Step back when appropriate
For all families:
- Listen to self-advocates
- Examine your own assumptions about what's possible
- Advocate for community inclusion, not separate "special" programs
- Take care of yourself too
See Parents of Disabled Children, Caregiving.
The self-advocacy movement has transformed the lives of people with IDD:
History:
- People First (started 1974 in Oregon): "We are people first, our disabilities are second"
- Self-advocates have fought to close institutions, end subminimum wage, gain voting rights
- Increasingly visible leadership in disability rights movement
Current organizing:
- Closing remaining institutions
- Ending subminimum wage
- Fighting for community services funding
- Self-advocates in leadership positions
- Inclusive education
- Employment First policies
Self-Advocates Becoming Empowered (SABE) motto: "Nothing About Us Without Us"
See History of Disability Rights, Advocacy & Self-Advocacy, Get Involved.