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Community Resources for Individuals with Neuropsychological Disorders
Many individuals with neuropsychological disorders can benefit from obtaining information about their specific condition (e.g., traumatic brain injury, epilepsy, Alzheimer's, etc.), as well as community resources to assist them in addressing their weaknesses and locating services to assist them in maximizing their independence.
Following is information related to general community resources available to persons with neuropsychological disorders and their families, as well as resources for individuals with specific neuropsychological disorders.
- General Resources for Individuals with Neuropsychological Disorders
- Resources for Individuals with Brain Injury
- Resources for Individuals with Stroke
- Resources for Individuals with Progressive Dementias
- Resources for Individuals with Epilepsy
- Resources for Individuals with Brain Tumors
- Resources for Individuals with Multiple Sclerosis
- Resources for Individuals with Attention Deficit Hyperactivity Disorder
- Resources for Individuals with Autism
- Other Disease-Related Resources
General Resources for Individuals with Neuropsychological Disorders
- Brain Atlases. The following websites provide resources related to brain imaging and functional neuroanatomy for providers and/or clients. This information can be helpful in fostering understanding of how brain injury or disease affects individuals. In addition, clients may find these resources useful for understanding the types of imaging that they may undergo.
- Family Caregiver Alliance (FCA). The FCA is a nationally recognized information center on long-term care. The organization was founded in 1977 and was the first in the nation to provide services specifically for caregivers, targeting those caring for adults with Alzheimer's disease, stroke, Parkinson's disease, brain injury, and other debilitating cognitive disorders. The FCA offers nationwide information on educational programs, publications, advocacy, online programs and public policy research and development, as well as direct caregiver services for those who live in the San Francisco Bay Area. The FCA maintains an award-winning website which provides practical information on a wide variety of topics including care-planning, stress relief, and locating and using community resources such as in-home or day care services. Online interactive services for caregivers include a support group for caregivers, problem-solving consultation, and sharing of personal stories. The website also provides access to research findings and trends, information on specific diagnosis of cognitive disorders, statistics on long-term care, and recommended readings. The FCA's printable publications include Fact Sheets (in English, Spanish and Chinese), a quarterly consumer newsletter (Update), (Caregiving Policy Digest), and (California Caregiver).
- Toll-free telephone: (800) 445-8106
- E-mail: info@caregiver.org
- Website: www.caregiver.org
- National Alliance for Caregiving (NAC). The NAC was established in 1996 with a focus on improving the quality of life for care givers and care recipients. The NAC is comprised of members from grassroots organizations, professional associations, service organizations, disease-specific organizations, and government agencies. The NAC was originated to conduct research and policy analysis, develop national programs, and increase public awareness of family caregiving issues. The NAC publishes reports, policy papers, and brochures for caregivers. The NAC also maintains the AXA Foundation Family Care Resource Connection, a database of searchable multimedia resources on various medical conditions.
- E-mail: info@caregiving.org
- Website: www.caregiving.org
- Family Care Resource Connection: http://web.raffa.com/nac/axa/ or through the main website
- Independent Living Resources. A major concern for many individuals with cognitive impairments is the ability to return home and/or live as independently as possible. As an outcome of Section 702 of the Rehabilitation Act of 1973, all states have founded Centers for Independent Living to embody the values of disability culture and to initiate services that respect the civil and human rights of people with disabilities. These centers are dedicated to helping individuals maximize independent living arrangements and are based on consumer-driven advocacy. Independent Living Resources Utilization (ILRU) maintains a web-based national directory of centers for independent living organized by state. Additional information on independent living and disability advocacy is available through the National Center for Independent Living (NCIL). One of the oldest centers for independent living in the country is Paraquad, a not-for-profit community-based center operated by individuals with disabilities since 1970. Paraquad seeks to remove physical and tangible barriers to facilitate independent living and to develop programs that respond to the needs of individuals with all types of disabilities. Their mission is supported by advocacy, public policy, and 22 diverse service areas that include open entry to education, employment, housing, family support, and health care. Paraquad maintains a website with in-depth information on their programs, briefs and history on issues relevant to disability, and public policy agendas and updates.
- Independent Living Resource Utilization (ILRU):
- Voice/TTY: (713) 520-0232
- E-mail: ilru@ilru.org
- Website: www.ilru.org
- National Center for Independent Living (NCIL):
- Voice telephone: (877) 525-3400 or TTY: (202) 207-0340
- E-mail: ncil@ncil.org
- Website: www.ncil.org
- Paraquad:
- Voice telephone: (314) 289-4200 or TTY: (314) 289-4252
- E-mail: contactus@paraquad.org
- Website: www.paraquad.org
- Independent Living Resource Utilization (ILRU):
- Job Accommodation Network (JAN). JAN is a free consulting service provided by the Office of Disability Employment Policy of the U.S. Department of Labor. JAN provides information about job accommodations and the employability of people with functional limitations. The mission of JAN is to assist in the hiring, retraining, retention or advancement of persons with disabilities by providing accommodation information. JAN provides useful information to employers, rehabilitation professionals, and people with disabilities. JAN also maintains a database of contact information for individuals and organizations experienced in the modification of work environments for persons with disabilities. While not a job placement service, JAN's mission greatly enhances the ability of employers to provide job accommodations for persons with disabilities so as to increase job opportunities for persons with disabilities. Calls to JAN are answered by consultants who understand the functional limitations associated with a broad range of disabilities, and who have instant access to the most comprehensive and up-to-date information about accommodation methods, devices and strategies. The JAN website contains a number of valuable resources including accommodations, fact sheets, free publications, and links to disability information and legislation. The website also has a searchable online accommodation resource database that provides suggestions for accommodating for several different impairments.
- Toll-free telephone: (800) 526-7234 or TTY: (877) 781-9403
- E-mail: template link for query submissions available through the website
- Website: www.jan.wvu.edu
- Medicare Rights Center (MRC). The MRC was founded in 1989 to help older adults and people with disabilities receive affordable health care. The MRC is the largest independent source of health care information and assistance in the United States for people with Medicare. The MRC operates five programs: enrollment guidance, direct telephone services, education and training for clients and providers, public policy efforts, and national media communications. The MRC offers a fee-based professional membership program to providers working directly with the Medicare population. Membership offers guidance by Medicare counselors, resources and education, and annual subscription to the e-mail newsletter (Medicare Counselor). The MRC publishes a quarterly newsletter (MRC News) that can be accessed from the website or directly mailed to an address for a fee. The MRC website operates Medicare Interactive, which is a web-based counseling and assistance service. The MRC website is available in Spanish.
- Main telephone: (212) 869-3850
- Toll-free consumer hotline: (800) 333-4114
- Medicare Rights Center's Medicare Interactive Counselor: www.medicarerights.org/help.html
- Website: Medicarerights.org
- MRC en Espa�ol: http://medicarerights.org/enespanolframeset.html (or click link from English homepage)
- Medicare Interactive (MI). The Medicare Rights Center along with the National Alliance for Caregiving has created MI, an informational, searchable tool for understanding and working with Medicare. MI provides tools both for individuals and for organizations. The "MI Counselor" is the primary tool for individuals to access (along with tutorial, MI Help). There is a special section dedicated to caregivers, which includes guidance on getting help when caring for a loved one at home, caregiver rights and resources, respite care services, and how to advocate on behalf of a loved one. MI can be accessed at: www.medicareinteractive.org/help.
- National Alliance on Mental Illness (NAMI). NAMI was founded in 1979 and is the nation's largest grassroots organization dedicated to improving the lives of individuals and families living with serious mental illness through advocacy, research, support, and education. There is a chapter for each state and over 1,200 NAMI affiliates across the U.S. which carry out the organization's mission. Activities include public education, family and peer education and referrals, campaign activities for the rights of those living with mental illness, and visible events to raise public awareness. FaithnetNAMI is an outreach network of NAMI members and friends to all religious organizations, seeking to facilitate the role of spirituality in healing from mental illness. Another helpful resource is the Special Needs Estate Planning page. The website does not have special features for child or teenage visitors, but printed publications are available for younger age groups, as well as information on mental health issues in younger populations. Members can access multiple online special interest groups by diagnosis (e.g. OCD, Bi-polar, Schizophrenia), or by other shared interests (e.g. Veterans, college students). The NAMI website is available in Spanish.
- Main telephone: (703) 524-7600
- Toll-free information helpline: (800) 950-NAMI (6264)
- E-mail: info@nami.org
- Website: www.nami.org
- NAMI en Espa�ol
Resources for Individuals with Brain Injury
- The Brain Injury Association of America (BIAA). The BIAA maintains four focus areas: brain injury prevention, research, education and advocacy. The BIAA was originally founded in 1980 as the National Head Injury Association and addresses various brain injuries to include traumatic brain injury, anoxic brain injury, and open/closed brain injury. The BIAA currently has 43 chartered state affiliates and online links to a network of over 800 support groups through which consumers have access to information about specialized resources within particular regions across the country. Many states have their own toll free family help lines that can direct callers to other professionals such as local physicians, therapists, attorneys, and peer and family support groups. The BIAA has a national Help Line and responds to nearly 20,000 calls per year. Their award winning website contains an extensive in house library with free fact sheets, publications, and A-Z topics relevant to brain injury. The website also provides links for access to the bookstore where titles can be purchased for a fee, links to state TBI associations, information on TBI policy and research, and support and tips for parents, kids, friends, and family of those living with brain injury. Publications of the BIAA include a quarterly professional magazine (Brain Injury Source) and a bi monthly newspaper (TBI Challenge!).
- Main telephone: (703) 761-0750
- Toll-free information center: (800) 444-6443
- E-mail: info@biausa.org
- Website: www.biausa.org
Resources for Individuals with Stroke
- The American Stroke Association (ASA). The ASA, a division of the American Heart Association, is focused on reducing disability and death from stroke through efforts in research, education, fundraising, and advocacy. The ASA offers a wide range of products, programs, and services targeting clients, families, professionals and advocates. The ASA publishes a magazine (The Stroke Connection), written by professionals and other survivors, which includes topics such as living with stroke and associated conditions, reducing stroke risk, tips for daily living, and inspiration from other survivors. The ASA website includes information on finding support groups, a stroke "Encyclopedia", and a stroke risk calculator. Clinicians can download PDF files of client fact sheets in English or Spanish, find continuing education opportunities, and access current treatment guidelines and research findings.
- Toll-free telephone: (888) 4-STROKE (4-787653)
- E-mail: strokeconnection@heart.org
- Website: www.strokeassociation.org
- The National Stroke Association (NSA). The NSA is a private organization, dedicated to stroke prevention, treatment, rehabilitation, and research. The NSA provides support and education for stroke survivors and their families, and the general public. Audio-visual resources and fact sheets are available through the website, as well as the consumer-oriented magazine (Stroke Smart) and a printable stroke risk scorecard. The NSA provides resources including information about regional stroke centers, regional stroke support groups, and regional chapters of the NSA. Professional education resources include the multidisciplinary (Journal of Stroke and Cerebrovascular Diseases), a bi-monthly newsletter (Stroke Clinical Updates), and educational symposia. Targeted audiences include: providers, caregivers, women, African Americans, children, medical professionals, and EMS providers. The website has a section written in Spanish.
- Toll-free telephone: (800) STROKES (787-6537)
- E-mail: info@stroke.org
- Website: www.stroke.org
Resources for Individuals with Progressive Dementias
- The Alzheimer's Association. The Alzheimer's Association is dedicated to providing information, support and assistance to consumers with Alzheimer's disease and their families. In addition, the organization sponsors scientific research, research conventions, and awareness/advocacy initiatives relevant to Alzheimer's disease. The Alzheimer's Association maintains a website with information tailored for survivors, care providers, kids and teens, African American's, Latinos, and medical professionals. Unique features include an interactive brain tour. The website has links to local chapters, support groups and associations for related dementias. The Green-Field Library and "Ask Away" Reference Center collects a wide range of materials related to Alzheimer's disease and related disorders which can be accessed through an online librarian, in person, or by fax, telephone, or e-mail. Resource media includes books, journals, video tapes, audiocassettes, DVDs, and CD-ROMs.
- Toll-free 24/7 telephone helpline: (800) 272-3900
- E-mail: info@alz.org
- Website: www.alz.org
- Parkinson's Disease Foundation (PDF). The PDF is a leader in Parkinson's disease research, education, and public advocacy. The PDF funds research and supports people with Parkinson's disease, their families and caregivers through educational programs and support services. The PDF provides an "Ask the Expert" searchable information service, publication links, news and events, and a free e-mail subscription service. The PDF website also contains links to other not-for-profit foundations that support and serve those living with Parkinson's Disease; as well as links to advocacy, research, information for caregivers, clinical trials, chat lists, medical information, and resources, and services.
- Toll-free telephone: (800) 457-6676
- E-mail: info@pdf.org
- Website: www.pdf.org
- The Association for Frontotemporal Dementia's (AFTD). The AFTD promotes research and education, and supports persons diagnosed with frontotemporal dementias, their families and caregivers. The AFTD strives to educate providers and bring greater public awareness on frontotemporal dementias. Their website contains information about the various forms of frontotemporal dementia, as well as information for finding support groups, a free online newsletter, and links to other sources of interest for individuals affected by dementia.
- Toll-free telephone helpline: (866) 507-7222
- E-mail: info@ftd-picks.org
- Website: www.ftd-picks.org
- The Lewy Body Dementia Association (LBDA). The LBDA provides information to clients, caregivers, and professionals. The LBDA assists these stakeholders with outreach services including a caregiver helpline accessible by phone and e-mail, a quarterly newsletter, brochures, opportunities for volunteering, and support group contact information. The website includes a blog, occasional chat sessions with experts in the field, archived transcripts from chats, and links to current clinical trials and other websites of interest.
- Toll-free telephone helpline: (800) 539-9767
- E-mail: support@lbda.org
- Website: www.lewybodydementia.org
- The Huntington's Disease Society of America (HDSA). The HDSA is an organization dedicated to finding a cure for Huntington's disease. The HDSA sponsors on-going scientific research and an annual convention for professionals and the public. Additionally, a range of medical, educational and support resources are available through the HDSA's 21 Centers of Excellence for comprehensive client and family services. Information and support are available online, as well as through an extended network of state chapters. In addition to contact information for medical care services (such as genetics testing and specialty care), the HDSA website includes links for local affiliates, their youth alliance, rehabilitation/adaptive equipment, and general information on care of Huntington's disease.
- Toll-free telephone: (800) 345-HDSA (4372)
- E-mail: hdsainfo@hdsa.org
- Website: www.hdsa.org
Resources for Individuals with Epilepsy
- The Epilepsy Foundation. The Epilepsy Foundation works to serve children and adults affected by seizures through research, education, advocacy and service. In addition to their national office there are more than 60 affiliated Epilepsy Foundations that provide community-based services. The Foundation's website has several features for consumers including an online news magazine (Epilepsy USA), information about treatment options, member stories, Marketplace online store, access to special focus e-communities, and tailored pages for children and teens, women, and seniors. La Epilepsia is a Spanish version of the website.
- Toll-free telephone: (800) 332-1000
- Website: www.epilepsyfoundation.org
- En Espa�ol: www.fundacionparalaepilepsia.org/
- Epilepsy.com. Epilepsy.com is an award-winning web resource that provides information, support, and empowerment for individuals living with epilepsy. The website provides tailored services for kids, teens, women, families, and older adults. Content includes general information about epilepsy and seizures, diagnosis, treatment, and seizure preparedness. There are also links for understanding images of the brain and a video segment on understanding epilepsy. The information is targeted toward consumers, but would be interesting and informative for non-specialist professionals. The website includes multiple educational and interactive features including a question and answer session with a resource specialist, chat room, blogs, personal stories, forum for connecting with individuals who have similar interests, and support groups.
- Website: www.Epilepsy.com
Resources for Individuals with Brain Tumors
- The National Brain Tumor Foundation (NBTF). The NBTF is dedicated to supporting people whose lives have been affected by brain tumors. The NBTF provides support and education for clients and their families and friends, and provides funding for research dedicated to treating and curing brain tumors. The NBTF has three objectives:
- providing objective information regarding treatment options and community resources to those with brain tumors;
- providing opportunities to connect clients, caregivers, family, and health care providers; and
- to provide hope to those with brain tumors.
- Toll-free telephone: (800) 934-2873
- E-mail: nbtf@braintumor.org
- Website: www.braintumor.org
- American Brain Tumor Association (ABTA). The ABTA was founded in 1973 and exists to eliminate brain tumors and to meet the needs of individuals with brain tumors and their families. The ABTA website is divided into customized sections for clients, providers, and children. Resources include topics on caregiving and support, education about tumors and treatment, access to free patient education materials, and information about clinical trials. Healthcare professionals can use the website to learn about upcoming meetings, clinical trials, research applications and awards, links to journals that publish on neuro-oncology topics, and direct ordering for patient education materials. The ABTA Kids Page has age appropriate education about tumors and treatment, a section for kids to share their stories, and interactive activities. The website has a great deal of information on brain systems including diagrams and videos of the brain; PDF versions of many chapters of the ABTA book (A Primer of Brain Tumors); and a dictionary of brain terms. The website can be viewed in three size fonts for improved readability.
- Main telephone: (847) 827-9910
- Toll-free patient line: (800) 886-2282
- E-mail: info@abta.org
- Website: www.abta.org
Resources for Individuals with Multiple Sclerosis
- The Multiple Sclerosis Association of America (MSAA). The MSAA helps individuals affected by Multiple Sclerosis (MS), their friends and family, and society in general. The MSAA provides a wide array of support and services for registered clients through its regional and field offices as well as through the website. The MSAA also promotes education on the diverse needs and challenges of those living with MS. Social support programs include client to client cooperation; reassurance calls and 'buddy' programs; and sponsorship of family togetherness events and motivational programs. The MSAA operates programs for obtaining free diagnostic and tracking MRIs, equipment, and ramp-building, for qualifying individuals. The MSAA also owns and operates five barrier-free housing complexes for individuals with special living needs. The MSAA website provides information on clinical trials and new therapies, physician referrals, and a wealth of informational resources. The MSAA website is disability-friendly and has a prominently displayed selection for viewer preferences, such as font-size and keyboard navigation options. The site also provides a link for the Spanish version of the website.
- Toll-free telephone: (800) 532-7667
- E-mail: webmaster@msassociation.org
- Website: www.msaa.com
- MSWorld - Online Support. MSWorld has been a volunteer "clients helping clients" organization since 1996. They offer website features including online chat, message boards, a resource center, local and regional events, and an online magazine. MSWorld has been given Netscape's 'Editor's Choice' label.
- Website: www.msworld.org
Resources for Individuals with Attention Deficit Hyperactivity Disorder (AD/HD)
- Children and Adolescents with Attention Deficit/Hyperactivity Disorder (CHADD). CHADD was founded in 1987 to provide education, advocacy and support for individuals with AD/HD. CHADD publishes a variety of printed materials on current research and treatments for AD/HD, targeting educators, professionals and parents. CHADD also operates the National Resource Center on AD/HD (NRC); a national clearinghouse for evidence-based information on AD/HD. The CHADD website offers education about diagnosing AD/HD, a list of common myths and misunderstandings, information for school rights, online information request, list of frequently asked questions, a locator for CHADD chapters, a directory of professionals trained to work with AD/HD, links to other online national resources, professional resources for training, and information/registration for the annual conference. The website has a section for Spanish speaking clients.
- Main telephone: (301) 306-7070
- Toll-free access to Health Information Specialists: (800) 233-4050 or through template link for query submissions available through the website
- Website: www.chadd.org
- National Resource Center: www.help4adhd.org, (800) 233-4050, or through the main website
- Bookstore. The Attention Deficit Bookstore contains over 100 books written for parents, teachers, and clinicians. In addition, there are links to several AD/HD resources for general information, newsletters, classroom interventions, and medication treatment.
- Website: www.add411.com
- ADHD Arena. The ADHD Arena provides professionals, researchers, individuals and carers with information on the range of books and journals produced by Psychology Press and Routledge. Subjects covered by this website include: Attention Deficit Disorder (ADD) and Attention Deficit and Hyperactivity Disorder (AD/HD).
- Website: www.ADHDarena.com
Resources for Individuals with Autism
- The Autism Society of America (ASA). The ASA has been the leader in serving individuals with autism and their families for over 40 years. The ASA mission is to increase public awareness about the day-to-day issues faced by people with autistic spectrum disorders, to advocate for appropriate services for such individuals across the lifespan, and to provide information regarding treatment, education, research and advocacy. The ASA website contains general information about diagnosis and treatment of autism; information on early intervention; supportive resources for addressing family issues; an interactive chapter locator for local autism resources; "tips of the day"; and links to other national organizations. The ASA website has a section for Spanish speaking clients. Some web services are for members only, but registration to the ASA website is free. The ASA publications include a quarterly magazine (The Autism Advocate), an online newsletter (ASA-net), and an article series (Living with Autism). The ASA also operates Autism Source, a searchable online referral database of services and supports. The website is available in Spanish.
- Toll-free telephone: (800) 3-AUTISM (328-8476)
- E-mail: access to various departments through the website
- Website: www.autism-society.org
- Autism Source: www.autismsource.org or available through the main website
Other Disease-Related Resources
- The American Autoimmune Related Diseases Association (AARDA). The AARDA has a mission to eradicate autoimmune diseases (e.g., lupus, Sjogren's syndrome) and to alleviate suffering and socioeconomic impact of autoimmunity by fostering and facilitating collaboration in education, research, and client services. The AARDA does not provide direct client services, but does offer educational resources online, physician conferences, national awareness campaigns, research, a referral line, and a quarterly newsletter (In Focus).
- Telephone: (586) 776-3900
- E-mail: aarda@aarda.org
- Website: www.aarda.org
- National Organization for Rare Disorders (NORD). NORD is a federation of over 140 voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. Services include the newsletter (Orphan Disease Update), provider pamphlets, a searchable database of rare diseases, a database of organizations, and the Orphan Drug Designation Database. NORD sometimes charges nominal fees for information obtained through its database subscriptions. However, the public can subscribe to free e-mail updates and "News Blasts" from NORD. Membership to NORD is available for a fee.
- Toll-free telephone: (800) 999 6673 (voice mail only); TTY: (203) 797-9590
- E-mail:
- Main: orphan@rarediseases.org
- Caregiving and services: rn@rarediseases.org
- Genetic testing: genetic_counselor@rarediseases.org
- Website: www.rarediseases.org
- The Hydrocephalus Association. The Hydrocephalus Association provides support, education and advocacy for people whose lives have been affected by hydrocephalus, and the professionals who work with them. The association provides educational materials, research updates, and access to heath care. They publish a quarterly newspaper, booklets and fact sheets targeted for specific audiences, and handouts on relevant questions to ask a provider. The website contains information on diagnosis and treatment, education on living with life-threatening complications, pictorials on brain physiology, a glossary of medical terminology, and a directory of physicians who specialize in treatment of hydrocephalus. Free PDF booklets are available for download on topics relevant for new parents, families, young and middle age adults, and Spanish-speaking clients. Informational pages have a font-size selection tool prominently displayed. The Hydrocephalus Association website has a link to Gabriel's Life, a partner website, which offers personal stories, a community blog, forum discussion, an event calendar, and connections for community support.
- Toll-free telephone: (888) 598-3789
- E-mail: info@hydroassoc.org
- Website: www.hydroassoc.org
- Gabriel's Life: www.gabrielslife.org
- Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America. The CFIDS Association of America was founded in 1987 and leads national efforts in education, awareness, public policy, and research on Chronic Fatigue Syndrome (CFS). The CFIDS Association has resources and educational materials targeted to specific populations to include newly diagnosed and long-term patients, youth, women, parents, family members, caregivers, support groups, the general public, and health care professionals. The website has resources for clients and professionals; a reading list; free brochures, fact sheets, and booklets; information on legal topics such as insurance, social security, and workplace issues; updates on advocacy activities; and links to other relevant national resources and support groups. The website also has a link to the website for the National CFS Awareness Campaign which was developed in 2006 to educate the general public and health care professionals about CFS. The CFIDS Association of America publishes a quarterly newsletter (CFIDS Chronicle), a scientific journal (CFS Research Review), and E-newsletter (CFIDSLink).
- Main telephone: (704) 365-2343
- E-mail: template link for query submissions available through the website
- Website: www.cfids.org
- National CFS Awareness Campaign: www.cfids.org/sparkcfs/
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