Working with the Community Living with Disabilities

Understanding and Working with Communities Living with Disabilities

The Centers for Disease Control categorizes disabilities into six main categories: Mobility, Cognition, Independent Living, Hearing, Vision, and Self-Care. The CDC reports that 61 million adults in the United States live with a disability, and in New York that number is 3,895,999 - representing 25% of the adults residing in New York. According to Suffolk County Government's Division of People with Disabilities, 283,000 of Suffolk's population of 1.5 million adults and children have disabilities - or 18.5%. The Nassau County Office for the Physically Challenged recognizes over 250,000 adults and children with disabilities, or 18% of the Nassau population of 1.39 million residents.

Six Disability Types

 

Data Sources

DHDS LogoThe Disability and Health Data System (DHDS) is managed by the Centers for Disease Control, providing instant access to state-level health and demographic data about adults with disabilities. "Users can customize data maps, charts, and tables, making it easy to see information about their state or region. They can identify health differences between adults with and without disabilities overall, and by age, sex, and race/ethnicity. Data can be used in presentations, reports, grant applications, or to inform decision-makers." 

 

DisabilityStatistics.orgDisability Statistics from the Yang-Tan Institute The estimates provided on this website are based on analyses of three different data sources: the American Community Survey (ACS), Current Population Survey (CPS), and Census 2000. The Yang-Tan Institute (YTI) is based out of Cornell University. 

StateData.InfoStateData.info allows users to find, sort, and analyze data related to employment for people with intellectual and developmental disabilities (IDD). The site includes data from state IDD agencies, and vocational rehabilitation outcomes and services from the Rehabilitation Services Administration. It also features data from the Social Security Administration, state mental health agencies, the U.S. Census Bureau's American Community Survey, the National Core Indicators Project, and the U.S. Department of Labor.

 

Center for Research on DisabilityThe Annual Disability Statistics Compendium, Annual Disability Statistics Supplement, and State Reports for County-level Data are web-based tools that pool disability statistics published by various federal agencies together in one place. The Annual Disability Statistics Supplement provides hundreds of additional tables breaking down the content found in the Compendium by age, gender, and race-ethnicity. The State Reports for County-level Data provide county-level statistics for each state complimenting the content found in the Compendium and Supplement. These are provided through the Center for Research on Disability, based out of the University of New Hampshire. 

Guides and Infographics

ACL_NIDILRR logoThe National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) is the federal government’s primary disability research organization. NIDILRR is part of the Administration for Community Living.

SBU Disability Studies Research GuideSBU Library Disability Studies Research Guide

 

Focus Groups in Intellectual Disabilities Research Guide: Focus Groups in Intellectual Disabilities Research

Guidelines for Researchers when Interviewing People with an Intellectual DisabilityGuidelines for Researchers when Interviewing People with an Intellectual Disability

Tips for Communicating with Female Patients with Intellectual Disabilities Tips for Communicating with Female Patients with Intellectual Disabilities

 

Disability Impacts All of Us

Thumbnail Disability Affects All of Us

 

Communicating With and About People with Disabilities

Thumbnail Communicating Disabilities

Accessibility

 

What Healthcare Professionals Can Do to be AccessibleWhat Healthcare Professionals Can Do to be Accessible

Rick Hansen Foundation logoRick Hansen Foundation Accessibility Resource Library

Rick Hansen Foundation Accessibility Certification Tip Sheet

US Access Board logoMedical Diagnostic Equipment Accessibility Standards: U.S. Access Board

Prescription Drug Container Labels for Vision Impaired: U.S. Access Board

ADA ADA Standards for Accessible Design

Access to Medical Care for Individuals with Mobility Disabilities: ADA Guidance

Effective Communication: ADA Requirements

2010 ADA Standards for Accessible Design

 

Articles

NIDILRR Publications and Resources

Intellectual and developmental disabilities research centers: Fifty years of scientific accomplishments

Engaging the disability community in informatics research: rationales and practical steps

Conducting Accessible Research: Including People With Disabilities in Public Health, Epidemiological, and Outcomes Studies

Flourishing together: research protocol for developing methods to better include disabled people’s knowledge in health policy development

Cultivating inclusivity in precision medicine research: disability, diversity, and cultural competence

What Can We Learn From a Human-Rights Based Approach to Disability for Public and Patient Involvement in Research?

Strategies used to engage hard-to-reach populations in childhood disability research: a scoping review

Inclusion team science improves participation of children with disabilities in pediatric obesity programs

Inclusive innovation in telehealth

Physical Activity and Public Health among People with Disabilities: Research Gaps and Recommendations

Lessons Learned From Research Collaboration Among People With and Without Developmental Disabilities

Students with Disabilities in Life Science Undergraduate Research Experiences: Challenges and Opportunities

Enhancing research practice in developmental disabilities

Research Trends and Recommendations for Physical Activity Interventions Among Children and Youth With Disabilities: A Review of Reviews

Enhancing research practices in intellectual and developmental disabilities through person-centered outcome evaluation

Recruiting and Retaining People With Disabilities for Qualitative Health Research: Challenges and Solutions

Excluding People With Disabilities From Clinical Research: Eligibility Criteria Lack Clarity And Justification

Participant assent in behavior analytic research: Considerations for participants with autism and developmental disabilities

Inclusion of People with Disabilities in Research to Improve Medication Adherence: A Systematic Review

Translational Research – Adolescents and Young Adults with Chronic Conditions and Disabilities Striving for Independence in Self-Management and Navigating Healthcare Transitions

Harmonizing Disability Data To Improve Disability Research And Policy

Physical Disability and Psychedelic Therapies: An Agenda for Inclusive Research and Practice

 

Other Resources

Working while Disabled - Social Security Administration 2023

Transition Guide for Youth: Planning and Managing Your Own Health and Career Goals

Achieving Healthy Weight and Obesity Prevention for People with Disabilities

 

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