What Does it Mean to Have a Developmental Disability?

The term "Developmental Disability" was defined by the Developmental Disabilities Assistance and Bill of Rights Act of 2000 (Public Law 106-402) as “a severe, chronic disability of an individual that: is attributable to mental or physical impairment or combination of mental and physical impairments; is manifested before the individual attains the age of 22; is likely to continue indefinitely; results in substantial functional limitations in 3 or more of the following areas of major life activity: self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living and economic self-sufficiency; and reflects the individual's need for a combination and sequence of special, interdisciplinary, or generic services, individualized support, or other forms of assistance that are of lifelong or extended duration and are individually planned and coordinated.

When applied to infants and children, developmental disabilities means an individuals from birth to age 9, inclusive, who has a substantial developmental delay or specific congenital or acquired condition, and may be considered to have a developmental disability without meeting 3 or more of the criteria above if the individuals, without services and supports, has a high probability of meeting those criteria later in life.

For more information, visit: Centers for Disease Control and Prevention; division of Birth Defects and Developmental Disabilities, Hereditary Blood disorders, and Human Development and Disability: http://www.cdc.gov/ncbddd/default.htm

National and Regional Organizations working with People with Developmental Disabilities

National Organizations*

Volunteer information for many national organizations is best found by contacting a local chapter/center.

• Developmental Disabilities Research Centers: http://www.aucd.org/ddrc/index.html   for a directory of local centers, go to http://www.aucd.org/ddrc/directory.html
• Therapy Dogs International:  http://www.tdi-dog.org/whatdo.html
• Camps for Adults with developmental disabilities:http://grownupcamps.com/cgi-bin/mappage.cgi?category=a%2e+devel%2e+challenged&camp=guc#
• Camps for children and teens with Developmental disabilities: http://www.mysummercamps.com/camps/Special_Needs_Camps/Developmental_Disabilities/index.html
• www.kidscamps.org
• Parent advocacy Coalition for Education Rights: www.pacer.org
• ARCH National Respite Network and Resource Center
• Chapel Hill Training Outreach Project.www.chtop.com/archbroc.htm  
• Disability Rights Education and Defense Fund: www.dredf.org
• Autism Society of America: http://www.autism-society.org
• Spina Bifida Association: http://www.sbaa.org To go directly to their “how to Help” page click on this link: http://www.sbaa.org/site/c.gpILKXOEJqG/b.2017605/k.955B/How_to_Help.htm
• AutismLink: http://www.autismlink.com/
• Mountain Valley Developmental Services (Colorado): http://www.mtnvalley.org/
• National Down Syndrome Society: http://www.ndss.org/ to volunteer to organize or help with one of their many annual buddy walks, go to http://www.buddywalk.org/index.cfm/fuseaction/findawalk.contentItem/contentID/79a560f3-7159-4ca1-b63e-73aafa116021
• For an extensive list of Regional, National and international sites on Down Syndrome, go to: http://www.downsyndrome.com/
• National Alliance for the Mentally Ill: www.nami.org
• North American Riding for the Handicapped Association: http://www.narha.org  
• National Organization on Fetal Alcohol Syndrome: http://www.nofas.org/
• American Association on Mental Retardation: http://www.aamr.org/
• The National Fragile-X Foundation: www.fragilex.org
• The March of Dimes: http://www.marchofdimes.com  for volunteer opportunities go to: http://www.marchofdimes.com/howtohelp/864.asp
• Reading for the Blind and dyslexic: www.rfbd.org to volunteer, go to http://www.rfbd.org/support_1.htm
• American Academy for Cerebral Palsy and Developmental Medicine: http://www.aacpdm.org
• the ARC: http://www.thearc.org
• Best Buddies http://www.bestbuddies.org click the “volunteer” link on the left for information.
• United Cerebral Palsy http://www.ucp.org
• Special Olympics http://www.specialolympics.org to volunteer, go to http://www.specialolympics.org/Special+Olympics+Public+Website/English/Volunteer/default.htm or click on the “volunteer” link in the middle of the page.
• Easter Seals http://www.easterseals.com for volunteer information, go to http://www.easterseals.com/site/PageServer?pagename=ntl_volunteering&s_esLocation=jo_md
• National Autism Association www.nationalautismassociation.org/
• The National Association for the Dually Diagnosed (for people with both developmental disabilities and mental health needs): http://www.thenadd.org/
• Organization for Autism research http://www.researchautism.org/  to volunteer, visit http://www.researchautism.org/support/volunteer/index.asp for more "Ways to help" go to http://www.researchautism.org/support/ways/index.asp

Local and Regional Organizations*

• Bread & Roses (Central California): www.breadandroses.org
• Community options ( New Jersey, New Mexico, New York, Pennsylvania, Texas, Tennessee, and Wisconsin) http://www.comop.org/ for volunteer information, go to http://www.comop.org/getinvolved/volunteer.htm
• Chesapeake Service Systems (Virginia) http://www.css-online.org to sign up to volunteer, go to http://www.css-online.org/v2/volunteer.asp
• Enable of New Jersey: http://www.enablenj.org to get information on volunteering, go to http://www.enablenj.org/Connect.htm
• Center for Human Development, Inc (Oregon) http://www.chdinc.org/ for volunteer information, click on the “opportunities” link at the top of their main web-page and select “volunteers” from the menu
• A national list of therapy and respite camps for adults and children with developmental disabilities: http://www.familyvillage.wisc.edu/Leisure/camps.html#camplist
• Mosaic (Nebraska): http://www.mosaicinfo.org  for volunteering information, go to http://www.mosaicinfo.org/volunteers/index.htm and http://www.mosaicinfo.org/volunteers/help/index.htm
• National Association for Down Syndrome (Chicago Metropilitan area) http://www.nads.org/
• Down Syndrome Association of Wisconsin: http://www.dsaw.org/  for volunteer information, click on the "get involved" link just under the heading banner and select from the menu list.
• Franklin College in Indiana lists local organizations with volunteer opportunities to serve people with Developmental disabilities http://www.franklincollege.edu/VOweb/viewopps.cfm?cid=27
• Central Texas Autism Center: http://www.ctac1.com/
• Pathways (Kentucky): http://www.christiancarecommunities.org/pathways.asp 
• Abilities foundation (Florida) http://www.abilitiesfoundation.com For volunteer information, visit: http://www.abilitiesfoundation.com/content/default.aspx?pageID=924
• Texas Association on Mental Retardation: http://www.tamr-web.com/
• Northwestern Human Services (Pennsylvania and Delaware)
  http://www.nhsonline.org/pages/mental_retardation.htm
• Down Syndrome Association of Greater Cincinnati: http://www.dsagc.com/
• Enable of Central New York: http://www.enablecny.org/. to link directly to the “volunteer” page, go to http://www.enablecny.org/getinvolved/volunteer.cfm
• Each state has a developmental disabilities council to whom the chapters can turn for advice by contacting the National Association of Councils on Developmental Disabilities http://www.nacdd.org , or more specifically, http://www.nacdd.org/pages/councils.htm#links

Some Project Ideas:*

• Clean facility or camp which serves this population
• Do landscaping or painting at one of these facilities
• Do Office Work: filing, envelope stuffing, inventory, data entry
• Plan or work at an event for people with Developmental Disabilities.
• Assist in Marketing and/or Community Awareness
• A site which helps kids without disabilities to learn about autism spectrum disorders is http://www.cdc.gov/ncbddd/kids/kautismpage.htm  
• Plan and run a Developmental Disabilities awareness seminar on your campus or in your community
• Provide information to other students and organizations in your area of how they can help these people.
• Fundraising: Do your own fund raiser OR host, help to run, or participate in a fundraising event already planned by an organization
• Hold drives for goods needed at a facility serving this population
• Put on a show, read a book, or sing some songs for people at a facility.
• Become an advocate for legislation and policies to help people with Developmental Disabilities in your area.
• A helpful resource for this is the Community For All Toolkit http://thechp.syr.edu/toolkit/
• Work with staff members of a day-program or group home to take the individuals on an outing.
• Plan a learning activity to run at a school or day program.

* These lists are BY NO MEANS exhaustive but they will give you an idea of what organizations and opportunities are out there for us to provide service to these people who are in such great need.