Links, A-Z

This list is not intended to be comprehensive; rather, it offers a sample of quality resources that are useful starting points for those interested in the following topics.


A

Accessibility and Mobility

Easter Seals Project Action: Bus stop accessibility assessment Toolkit and Bus Stop Check lists from Easter Seals Project Action which strives for accessible community transportation. The tool kit (new window) is available for download in pdf or text versions or print copies can be ordered for free.

United We Ride: This is the website for the Coordinating Council on Access and Mobility (CCAM) which is charged with coordinating efforts for human service transportation for individuals with disabilities and other citizens.  The website contains information about policies, resources, and emergency preparedness as it relates to transportation.  See their resources at Untied We Ride Fact Sheets (new window)

Alzheimer’s Disease

Tips for Caregivers for Individuals with Alzheimer’s disease (new window)

Assistive Technology

Autism

B

Behavior

Breast

Breast Cancer Screening Survey for Women with Disabilities (new window)

The American Association on Health and Disability (AAHD) is the recipient of a grant from Susan G. Komen for the Cure entitled, “Project Accessibility: Removing Barriers for Women with Disabilities”. The purpose of the grant is to increase accessibility of mammogram facilities in the DC Metro area. AAHD has developed a Breast Cancer Screening Women’s Survey to help gain a better understanding of what types of barriers are keeping women with disabilities from getting their mammograms. If you are a woman with a disability and reside in Washington, DC or the surrounding Metro areas (District of Columbia, Alexandria City, or Prince George’s, Fairfax, Loudon, Arlington or Prince William Counties). Please visit http://www.surveymonkey.com/s/G77ZLF3 (new window) to fill out the short survey.

Breast Health Care: Easy to Read, Easy to Understand (new window) (PDF) Brochure for individuals with intellectual and developmental disabilities about preventative care for breast health. Sponsored by the Susan G. Komen for the Cure Foundation and written by the National Office on Disability and Health, Chapel Hill, NC.

C

Caregiver Resources

Ask Medicare has a new set of resources for caregivers. This web site has a video of one family’s story, and highlights programs and resources improve a caregiver’s well-being. It also has a links to services available for caregivers and care recipients through the HHS Administration on Aging, HHS Centers for Medicare & Medicaid Services and other state and local programs. For more information visit the site at www.medicare.gov/caregivers (new window)

Celiac Disease

Physician Awareness of Celiac Disease: a need for further education (new window)

Cerebral Palsy

Cerebral Palsy: An Overview. (new window)Also available in full-text .pdf pdf, click here (new window).

Special supplemental issue of Developmental Medicine and Child Neurology (new window) devoted to adults with Cerebral Palsy edited by Dr. Laura Tosi from Children’s National Medical Center

D

Dementia

Pain Control for Individuals with Dementia and Intellectual and Other Developmental Disabilities

Developmental Disability

The Elizabeth M. Boggs Center on Developmental Disabilities (new window)
particularly the

Disability

Going Beyond Disease to Address Disability

The Centers for Disease Control and Prevention have published the 2006 Disability and Health State Chartbook: Profiles of Health for Adults with Disabilities.

Down Syndrome

Health Care Management for Adults with Down Syndrome

E

Early Intervention

See our project page on the Georgetown University Early Childhood Intervention Professional Development Center, DC Strong Start Comprehensive System of Personnel Development (CSPD) for more information on this topic

Employment

See our webpage on Employment

Emergency Preparedness

Autism Safety Project (new window)
Autism Speaks started the Autism Safety Project which provides first responders with information and guidelines for communicating with individuals with Autism Spectrum Disorder (ASD) in emergency situations. One-page fact sheets can be emailed or printed for distribution to law enforcement, firefighters, emergency medical services, and others.

Emergency Check List (new window) (2006)
A helpful checklist for emergency preparedness for people with disabilities and persons aged 65 and older appears at the end of the newsletter.

Links:

F

Falls

Family Support

  • Ahead of the Curve: Emerging Trends and Practices in Family Caregiver Support (new window)
    Some states incorporate caregiver support services into their programs that serve older people or adults with disabilities; in other states, it is separate with distinct eligibility criteria. Because many states are increasing HCBS funding, policymakers and administrators have a strong interest in emerging trends. This report highlights three: caregiver assessment, consumer direction in family caregiver support services, and collaborations between the aging network and the health care system.
  • Family Caregiver Support: State Facts at a Glance (new window) (2006)
    The National Association of State Units on Aging (NASUA) in collaboration with the National Conference of State Legislatures (NCSL) and funded by the Administration on Aging, has just released a report that provides information by state about family caregivers, the state-level programs that serve them, and legislation introduced and enacted. State fact sheets from the report may be found on the NCSL website

Fitness

Flu

Flu.gov  (new window)has all new season

G

Genetics

A new interactive web portal called Genetics Home Reference (new window) from the National Institutes of Health

Guardianship

DDS Policy and Procedures on Emergency and Urgent Care Guardianship (new window).

H

Health, General

  • Bright Futures Health Promotion (new window)A national health promotion initiative with information and resources for families, health and mental health providers and the community regarding infants, children and adolescents. This website also contains Mental Health Tools for promoting Social and Emotional Development including What to Expect and When to Seek Help.
    • These are tools for families and providers around the social and emotional development of infants, children and adolescents. It addresses when and how to seek help when there are concerns.  Available in English and Spanish.
  • Disability and Health Information (new window): The Center for Disease Control & Prevention has a new page on their website about disability and health with many resources.
  • TheDesk.info (new window)E-News Update on the Medicaid Reference Desk
    Check out this exciting website where you can find information about Medicaid services in your state. http://www.thedesk.info (new window) is an accessible website about Medicaid for use by people with disabilities. The site has information posted about all fifty states and the District of Columbia. The team that created this website is now in the process of updating information in each state to keep it current.
  • National Center for Education in Maternal and Child Health (new window): Provides information about children and youth with special health care needs, health promotion, injury prevention, mental health, nutrition, oral health, physical activity, school health, and program development. Provides access to Bright Futures health promotion resources, National Maternal and Child Oral Health Resource Center publications, and Healthy Start infant mortality prevention resources.
  • Medical Home and Family-Centered Care (new window): American Academy of Pediatrics has information and tools on providing family-centered care in medical homes.

Health Care

Heat Stress

Extreme Heat: A Prevention Guide to Promote Your Personal Health and Safety (new window)
The Center for Disease Control and Prevention highlights important safety and health tips related to extreme heat conditions.

Signs of heat stress and prevention from the Occupational Saftey & Health Adminstration (OSHA)
English (new window)

Hospice Care
National Hospice and Palliative Care Organization (new window)

I

Injury

Center for Disease Control and Prevention: National Center for Injury Prevention and Control (NCIPC) (new window)

Intellectual Disability

American Association on Intellectual and Developmental Disabilities  (new window)(AAIDD) Definition and information about intellectual and other developmental disabilities.

Mental Retardation and Developmental Disabilities Research Reviews (new window)
Contains articles on diagnosis, treatment, and research into conditions affecting persons with developmental disabilities.

J

K

L

Learning and Developmental Disability Initiative (new window)

Long Term Care Initiative in DC

DC Department on Aging has launched a Long Term Care  (new window)Awareness campaign. You can find out more on their website DC Office on Aging (new window).

M

Mamography

Mamography Perspectives:  “its Easier Said Than Done” Perspectives on Mamomography From Women With Intellectual Disabilities.

Medication

FDA Safety Changes: Coumadin and Seroquel

M.E.E. Calendar

The M.E.E. (Move * Experience * Engage) Calendar!
developed by occupational and physical therapists

365 fresh ideas for things to do! by Janet Thomas, Jamie Hall, Toby Long, and Rachel Brady

Mental Health

NADD (new window)
National Association for the Dually Diagnosed. Information for persons with developemental disabillties and mental health needs and their families and advocates.

N

NADD

National Association for the Dually Diagnosed (NADD) has numerous resources.
To visit the website, click here (new window). In particular, check out their online training opportunities.

Nutrition

O

P

Pain

Articles available through Medscape (requires registration)

Pain Assessment Scales

Palliative Care

Palliative Care for Latino Patients and Their Families: Whenever We Prayed, She Wept (new window) (2009) JAMA 

R

Radiology

Rights

Know Your Rights (new window) electronic newsletter and electronic discussion group provided by University Legal Services, the Protection and Advocacy Program for the District of Columbia. The information on the rights of individuals with disabilities is available in Spanish and English.

S

Sensational Ideas

SENSAtional Ideas for Adults with Developmental Disabilities (new window)

Suggested activities for all the senses, arranged in a checklist format to aid in documentation!
developed by occupational and physical therapists by Janet Thomas, Jamie Hall and Toby Long

Sensory Processing

Sensory Processing in Adults with Developmental Disabilities: Is it Sensory or Behavior? (new window) Quicktime presentation now available! Powerpoint presentation with audio commentary from Janet Thomas, MEd, OTR/L, Occupational Therapist

Sexuality

Establishing criteria for sexual consent capacity (new window).

Sexuality and people with intellectual disabilities: assessment of knowledge, attitudes, experiences and needs (new window).

Sibling Support

Sibling Support Project (new window)

Sibling Leadership Network (new window)

Sibling Issues (new window) Center for Parent Information and Resources

Social Strategies

Coping Strategies of Adults with Mild Intellectual Disability for Stressful Social Situations (new window)

Statistics

Disability and Health State Chartbook – 2006 Profiles of Health for Adults With Disabilities (new window)
by the Centers for Disease Control and Prevention

T

Transfers

Transportation

Traumatic Brain Injury

Traumatic Brain Injury Resource Guide (new window) created by University Legal Services, the Protection and Advocacy Program for the District of Columbia

U

V

Vitamin D

W

X

Y

Z