RTC:Rural Rural Institute University of Montana

logo for Montana Disability & Health Program: Living well under the Big Sky

Resources for Professionals & Service Providers

Resources for Professionals and Community Service Providers
(the Consumer Resource Directory also has great resources)

 Advocacy and Policy | AgingChildren with Disabilities  | 

Community Living Supports & Services 

Emergency Preparedness  |  Emotional/Mental Health  |  Employment  | 

General Medical & Health  |  Health Insurance 

 Intellectual/Developmental Disability  |  Other Disabilities & Special Populations  |   Nutrition  | 

Oral/Dental Health  |  Recreation and Exercise  |  Social Security Disability Benefits


Medical Services/Information on Specific Disabilities or Populations:

Blindness/Visual Impairment  |  Cancer |  Cardiovascular Conditions  |  Communication Disabilities |

Deafness/Hearing Impairment Infectious Disease  |  Limb Loss Metabolic Conditions |

Mobility Impairment  |  Native Americans with DisabilitiesNeurological Conditions |

Prescription Drug Assistance Programs | Pulmonary Conditions |  Rare Disorders  |   Skin Conditions

 Substance Abuse | Traumatic Brain Injury  | Women with Disabilities


Blindness/Visual Impairment:

Association for Education & Rehabilitation of the Blind & Visually Impaired International membership organization dedicated to supporting and assisting professionals who work in all phases of education and rehabilitation of blind and visually impaired children and adults.

Disability & Rehabilitation Research Project on Persons Aging with Hearing & Vision Loss: This collaboration of the Rehabilitation Research and Training Center on Blindness and Low Vision at Mississippi State University, San Diego State University, and the Helen Keller National Center for Deaf-Blind Youths and Adults focuses on strategies to improve outcomes for persons who are aging with dual  hearing and vision loss, with a special emphasis on issues of persons who were either deaf/hard of hearing or blind/visually impaired, and who after age 55 acquired the second sensory loss.

Glaucoma Research Foundation.

Hadley School for the Blind is the largest worldwide distance educator of blind and visually impaired people, their families and blindness service professionals. Hadley offers classes free of charge to its blind and visually impaired students and their families and affordable tuition classes to blindness professionals.

National Consortium on Deaf-Blindness is a comprehensive source of information and resources for families and teachers on deaf-blindness, technical assistance, and personnel training.

Low Vision Montana Based in Bozeman, this group of service providers and consumers promotes independence for Montanans with poor eyesight. Call 406-522-7300.

Montana Association for the Blind (MAB) – This statewide, nonprofit, self-help consumer organization works for the social and economic improvement of Montanans with visual impairments.

Montana DeafBlind Project is a source of specialized information, technical assistance, and resources focused on improving education, inclusion, and college and career readiness for individuals with combined hearing and vision loss between the ages of birth through 21. We provide technical assistance and resources to families, teachers, VR, medical providers, and more.

National Eye Institute .

Prevent Blindness America . Provides public and professional education, community and patient services programs and research.

Virginia Marie Sowell Center for Research & Education in Visual Impairment at Texas Tech University in Lubbock, Texas, offers degree and certification programs in visual impairment, orientation and mobility, and deafblindness.

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Cancer:

American Cancer Society Montana contact information:

Kristin Page Nei, Montana Government Relations Director
National Government Relations Department
3550 Mullan Road, Ste. 105
Missoula, MT 59808
1.877.488.7723, opt 3, ext 207
Kristin.Nei@cancer.org

Linda Lang, Montana Grassroots Advocacy Manager
550 North 31st Suite 103
Billings, MT 59101
Linda.Lang@cancer.org
1.800.252.5470, opt 3, ext 211

2007 Cancer Facts & Figures  Includes reports on death rates and new cases by state.

Intercultural Cancer Council Promotes policies, programs, partnerships, and research to eliminate the unequal burden of cancer among racial and ethnic minorities and medically underserved populations in the U.S. and its territories.

Montana Department of Public Health and Human Services:

Public Health and Safety Division:

Breast and Cervical Cancer Screening Program

Comprehensive Cancer Control Program:

Montana Comprehensive Cancer Control Plan Surveillance Reports

Montana Central Tumor Registry

Montana Tobacco Use Prevention Program:

Montana Tobacco Use Prevention Plan, Extended through 2010

National Cancer Institute

National Hospice and Palliative Care Organization

Native American Cancer Research Native American owned and operated non-profit organization implements cancer primary prevention, secondary prevention, risk reduction, screening (early detection), education, training, research, diagnoses, control, treatment, support, quality of life, and / or studies of cancer among Native Americans. Primary support is from federal agencies (e.g., the National Institutes of Health) and national organizations (e.g., the National Susan G. Komen Breast Cancer Foundation).

Native Circle at the Mayo Clinic is a resource center providing cancer-related materials to health care professionals and lay people involved in the education, care and treatment of American Indians and Alaska Natives.

Online Guide to Quitting includes tobacco cessation resources, expert advice and support, referrals to local resources, tools for individuals and professionals, and more.

Smoking Cessation Leadership Center is a national program office of the Robert Wood Johnson Foundation, with support from the American Legacy Foundation. SCLC aims to decrease smoking rates and increase the number of health professionals who help smokers quit. The Center partners with dental hygienists, nurses, pharmacists, emergency physicians, hospitals, labor unions, family physicians, the Veterans Health Administration and myriad other groups to increase cessation rates and cessation interventions.

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Cardiovascular Conditions:

American Heart Association AHA web site provides prevention and treatment information, resources, and links for people at risk for cardiovascular conditions, the general public, and health care professionals/researchers.

AHA’s American Stroke Association.

Montana Association of Cardiovascular and Pulmonary Rehabilitation

Montana Department of Public Health and Human Services

Public Health and Safety Division

Cardiovascular Health Program:

Cardiovascular Disease (CVD) And CVD Risk Factors Among Montana American Indians With And Without Disability  Montana Clinical Communication Surveillance Report, April-June 2006 (Text file with described figures and tables).

The Burden of Heart Disease and Stroke in the Big Sky State, 2007

Montana Tobacco Use Prevention Program:

Montana Tobacco Use Prevention Plan, Extended through 2010

National Heart, Lung, and Blood Institute .

Honoring the Gift of Heart Health: A Heart Health Educator’s Manual for American Indians From the National Heart, Lung and Blood Institute, this comprehensive, culturally-appropriate, user-friendly 10 lesson course on heart health education for American Indians has skill-building activities, reproducible handouts and idea starters.  Appendices include recipes and  Heart Health Educator training activities for program implementation.

National Institute of Neurological Disorders and Stroke.

National Rehabilitation Hospital  Specializes in traumatic brain injury, cardiac rehabilitation, orthopedic rehabilitation, spinal cord injury, and stroke recovery.

National Stroke Association Provides info on stroke prevention, recovery, treatment and clinical trials. Lists area support groups.

Online Guide to Quitting includes tobacco cessation resources, expert advice and support, referrals to local resources, tools for individuals and professionals, and more.

Smoking Cessation Leadership Center is a national program office of the Robert Wood Johnson Foundation, with support from the American Legacy Foundation. SCLC aims to decrease smoking rates and increase the number of health professionals who help smokers quit. The Center partners with dental hygienists, nurses, pharmacists, emergency physicians, hospitals, labor unions, family physicians, the Veterans Health Administration and myriad other groups to increase cessation rates and cessation interventions.

Velo-Cardio-Facial Syndrome Educational Foundation, Inc.

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Communication Disabilities:

National Institute on Deafness and Other Communication Disorders Conducts and supports biomedical and behavioral research and research training in the normal and disordered processes of hearing, balance, smell, taste, voice, speech, and language. Also conducts and supports research and research training related to disease prevention and health promotion; addresses special biomedical and behavioral problems associated with people who have communication impairments or disorders; and supports efforts to create devices which substitute for lost and impaired sensory and communication function.

Rehabilitation Engineering Research Center on Communication Enhancement is a collaborative research group dedicated to the development of effective augmentative and alternative communication (AAC) technology.  AAC refers to ways (other than speech) that are used to send a message from one person to another.

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Deafness/Hearing Impairment:

American Sign Language Teachers Association membership organization of more than 1,000 ASL and Deaf Studies educators from elementary through graduate education as well as agencies.

Deaf Doc Developed by a medical doctor who has been deaf from birth, this site offers free, reliable healthcare information, both directly and indirectly, for the Deaf and Hard of Hearing (D/HOH) community. Deaf Doc has separate areas for the D/HOH community, interpreters, healthcare and educational providers and institutions and others.  The site offers a Medical Video Dictionary, which is both signed and captioned.

Deafness Research Foundation Leading source of private funding for basic and clinical research in hearing science. Site has a directory of state resources.

Described and Captioned Media Program Provides a free-loan media program of over 4,000 open-captioned or described titles (videos, CD-ROM, and DVD) available to individuals with visual and hearing impairments, teachers, parents, and others with no rental, registration, or postage fees. DCMP also provides a print/online clearinghouse of information and materials on the subject of captioning/describing available to consumers, agencies, businesses, and schools. The clearinghouse maintains a database of described and captioned media available for purchase.

Disability & Rehabilitation Research Project on Persons Aging with Hearing & Vision Loss: This collaboration of the Rehabilitation Research and Training Center on Blindness and Low Vision at Mississippi State University, San Diego State University, and the Helen Keller National Center for Deaf-Blind Youths and Adults focuses on strategies to improve outcomes for persons who are aging with dual  hearing and vision loss, with a special emphasis on issues of persons who were either deaf/hard of hearing or blind/visually impaired, and who after age 55 acquired the second sensory loss.

Montana DeafBlind Project is a source of specialized information, technical assistance, and resources focused on improving education, inclusion, and college and career readiness for individuals with combined hearing and vision loss between the ages of birth through 21. We provide technical assistance and resources to families, teachers, VR, medical providers, and more.

Montana Universal Newborn Hearing Screening Program Assures that all infants receive screening for hearing loss before hospital discharge, or by one month of age if the infant is not born in a hospital.

National Consortium on Deaf-Blindness is a comprehensive source of information and resources for families and teachers on deaf-blindness, technical assistance, and personnel training.

National Institute on Deafness and Other Communication Disorders Conducts and supports biomedical and behavioral research and research training in the normal and disordered processes of hearing, balance, smell, taste, voice, speech, and language. Also conducts and supports research and research training related to disease prevention and health promotion; addresses special biomedical and behavioral problems associated with people who have communication impairments or disorders; and supports efforts to create devices which substitute for lost and impaired sensory and communication function.

National Resource Center for Early Hearing Detection and Intervention at Utah State University helps  state agencies, health care providers, hospitals, early intervention programs and families nationwide to develop and sustain comprehensive EHDI programs.

PEPNet is a national network of regional centers that provides resources, information, in-service training, and expertise to enhance educational opportunities for individuals who are deaf or hard of hearing and their families. PEPNet works with services providers in 2-year and 4-year colleges, universities, secondary education programs, community rehabilitation programs, continuing education programs, adult basic education programs, and vocational and technical training programs.

Rehabilitation Engineering Research Center on Communication Enhancement is a collaborative research group dedicated to the development of effective augmentative and alternative communication (AAC) technology.  AAC refers to ways (other than speech) that are used to send a message from one person to another.

U.S. Department of Health and Human Services, Office of Civil Rights has several online publications to help hospitals meet the communication needs of individuals who do not speak English as their primary language (i.e. are limited English proficient) or who are deaf or hard of hearing.

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Infectious Disease:

International Association of Physicians in AIDS Care offers members online educational and technical assistance to help improve the quality of care and treatment delivered to men, women, and children living with HIV/AIDS.

National Center for HIV, STD, and TB Prevention

National Center for Infectious Diseases

National Immunization Program

National Institute of Allergy and Infectious Diseases Conducts research aimed at developing better ways to diagnose, treat and prevent many infectious, immunologic and allergic diseases.

National Minority AIDS Council

Office of AIDS Research

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Limb Loss:

Amputee Coalition of America: Sponsors the National Limb Loss Information Center and publishes First Step: A Guide to Adapting to Limb Loss.

Rehabilitation Research and Training Center on Health and Wellness Promotes wellness for persons with cerebral palsy, multiple sclerosis, post polio syndrome, amputations, and spinal cord injury, as well as all other persons with disabilities.

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Metabolic Conditions:

American Academy of Periodontology provides information for individuals with diabetes.

American Association of Diabetes Educators is a professional association promoting the expertise of diabetes educators. Diabetes educators are healthcare professionals who help people with diabetes understand their disease and learn how to develop diabetes self-management skills.

American Diabetes Association

American College of Foot and Ankle Surgeons Offers free brochures, including Diabetic Foot Problems and Treatments.

American Liver Foundation.

American Optometric Association Diabetes Hot Line: 800-262-3947.

Community Medical Center – Diabetes Management Program (Missoula) Offers Certified Diabetes Management services.

Diabetes at Work can help businesses and managed care companies assess the impact of diabetes in the workplace, and provide intuitive information to help employees manage their diabetes and take steps toward reducing risks for related complications, such as heart disease. Provides information, tip sheets, tools, resources, etc. Information is also available in Spanish.

Diabetes Prevention Program’s Lifestyle Balance Fat Counter lists fat grams and calories for more than 1,500 foods, including regional foods from all parts of the U.S.

Large print version: Lifestyle Balance Fat Counter (Word document)

Large print version: Lifestyle Balance Fat Counter (pdf document)

DiabetesXChange.org is an online clearinghouse for promising diabetes -related community-based programs, university-sponsored initiatives, corporate wellness programs, and government projects.

National Diabetes Program at the National Center for Chronic Disease Prevention and Health Promotion, Centers for Disease Control and Prevention

National Federation of the Blind Sponsors the Diabetes Action Network and publishes Voice of the Diabeticnewsletter.

National Institute of Diabetes and Digestive and Kidney Diseases

National Diabetes Education Program has information and resources for people with diabetes, providers, family members, communities, employers, etc. Free publications are available.

National Kidney Foundation

St. Vincent Healthcare – Diabetes Center (Billings) Interdisciplinary team includes nurses, dietitians, physicians, pharmacists, physical therapists, a counselor and an American Diabetes Association representative. Eight members of the Diabetes Team are Certified Diabetes Educators.

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Mobility Impairment:

American Association of Spinal Cord Injury Nurses

American Association of Spinal Cord Injury Psychologists and Social Workers is an organization of psychologists and social workers who provide for the emotional, behavioral and psychosocial care of persons affected by spinal cord impairment (SCI).

American Paraplegia Society

American Physical Therapy Association.

Montana Chapter, American Physical Therapy Association

Arthritis Foundation. Offers more than 100 free brochures on arthritis and related conditions, such as fibromyalgia.

Rocky Mountain Arthritis Foundation Serves Colorado, Montana and Wyoming

Lisa Crowley, Program Coordinator
P.O. Box 769
Helena, Montana 59624
406-461-8368
lcrowley@arthritis.org

Growing Up with Spina Bifida: What Have We Learned Report from the North Carolina Office on Disability and Health summarizes the major findings of the spina bifida research study, “Quality of Life and Secondary Conditions in Individuals with Spina Bifida.”

Missouri Arthritis Rehabilitation Research and Training Center Research findings, news, and tips on living with fibromyalgia, juvenile arthritis, lupus, osteoarthritis, osteoporosis, psoriatic arthritis, rheumatoid arthritis, scleroderma, and Wegener’s.

Model Systems Knowledge Translation Center Summarizes research, identifies health information needs and develops systems for sharing information for the NIDRR model systems programs in traumatic brain injury, spinal cord injury and burn injury.

Northwest Regional SCI System at the University of Washington, Seattle

Rocky Mountain Regional SCI System at Craig Hospital, Englewood, Colorado

Muscular Dystrophy Association. Sponsors 230 hospital-affiliated clinics with staff experienced in dealing with neuromuscular diseases. Clinics also serve as sites for clinical trials of the latest experimental therapies and drugs. MDA also offers support groups for those with neuromuscular diseases and their families. More than 4000 children attend annual MDA summer camps.

National Center on Physical Activity and Disability  Provides “Physical Activity Guidelines for Individuals with Spina Bifida” .

National Council on Folic Acid NCFA is a partnership of national organizations and associations, state folic acid councils and government agencies whose mission is to improve health by promoting the benefits and consumption of folic acid.

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)

National Institute of  Osteoporosis and Related Bone Diseases Provides patients, health professionals, and the public with an important link to resources and information on metabolic bone diseases, including osteoporosis, Paget’s disease of the bone, osteogenesis imperfecta, and hyperparathyroidism.

National Osteoporosis Foundation. Provides information for patients and professionals on preventing and treating osteoporosis.

National Rehabilitation Hospital  Specializes in traumatic brain injury, cardiac rehabilitation, orthopedic rehabilitation, spinal cord injury, and stroke recovery.

National Spinal Cord Injury Association. On-line Resource Center provides an overview of spinal cord injury and disease, lists support resources, and updates visitors on research studies, political action initiatives and news stories.

Spinal Cord Central Operated jointly by United Spinal Association and the National Spinal Cord Injury Association, this web site is for members of the spinal cord injury/disease (SCI/D) community who are seeking information and resource referrals related to SCI/D. The program serves all people with paralysis as a result of spinal cord injury or disease, their families, friends and others who have a strong interest or involvement with them.

Paralyzed Veterans of America. Provides resources for professionals and for people with paralysis, including “Living with SCI” area, sports and recreation resources, research and education and national advocacy.

Rehabilitation Research and Training Center on Health and Wellness Promotes wellness for persons with cerebral palsy, multiple sclerosis, post polio syndrome, amputations, and spinal cord injury, as well as all other persons with disabilities.

Rehabilitation Research and Training Center on Secondary Conditions in Individuals with Spinal Cord Injury Focuses on the quality of life for people with spinal cord injury, and studies the effect of exercise as a way to prevent a wide range of secondary conditions, such as cardiovascular disease, osteoporosis, respiratory dysfunction, urinary tract infection, depression, and pain.

Rehabilitation Research and Training Center on Spinal Cord Injury: Promoting Health and Preventing Complications through Exercise Focuses on the quality of life for people with spinal cord injury, and studies the effect of exercise as a way to prevent a wide range of secondary conditions, such as cardiovascular disease, osteoporosis, respiratory dysfunction, urinary tract infection, depression, and pain.

Sexuality and Reproductive Health Following Spinal Cord Injury, Evidence Report/Technology Assessment: Number 109  This report focuses on: 1. Issues related to fertility, pregnancy rates, pregnancy complications and management, and live births in persons with SCI, and 2. Issues related to male impotence post-SCI.

Shepherd Spinal Cord Injury Center. Atlanta-based catastrophic care hospital treats people with spinal cord injuries, acquired brain injuries, multiple sclerosis and other neuromuscular illnesses and urological problems.

Spina Bifida Association of America Addresses the specific needs of infants, children and adults with spina bifida, their families, and professionals who serve them. As the national representative of over 70 chapters, provides information and referral services, publishes materials, funds research, provides training, and conducts individual and systems advocacy.

The Institute for Rehabilitation and Research. Home to the Brain Injury Research Center, Amputee Program Research Projects, Spinal Cord Injury Research Program, and Independent Living Research Utilization

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Native American Issues

American Indian Health sponsored by the National Library of Medicine, this web portal brings together health and medical resources pertinent to the American Indian population including policies, consumer health information, and research. Links are provided to an assortment of documents, Web sites, databases, and other resources.

Association for Multicultural Rehabilitation Concerns This diverse group advocates for the rehabilitation needs of multicultural persons with disabilities; ensures the provision of quality and equitable services; and enhances the development of multicultural rehabilitation professionals.

Capacity Building for American Indian Vocational Rehabilitation Projects at Western Washington University’s Center for Continuing Education in Rehabilitation.

Center for Research on Ethnicity, Culture and Health Provides a forum for basic and applied public health research on relationships among ethnicity, culture, socioeconomic status and health. The Center develops new interdisciplinary frameworks for understanding these relationships while promoting effective collaborations among public health academicians, health providers, and local communities.

Center for the Study of Cultural Diversity in Health Care Focuses on the role of race and ethnicity in shaping physicians’ and patients’ expectations, beliefs, and attitudes; disparities in the effects of many diseases and conditions on racial and ethnic groups; and inequities in health care delivery. Conducts educational programs, research initiatives, and outreach activities.

Consortia of Administrators for Native American Rehabilitation seeks to serve as an avenue for collaboration and cooperation between Administrators of rehabilitation projects serving Native American persons with disabilities, to increase and enhance the quality of services, resulting in positive outcomes for Native American persons with disabilities.

Honoring the Gift of Heart Health: A Heart Health Educator’s Manual for American Indians From the National Heart, Lung and Blood Institute, this comprehensive, culturally-appropriate, user-friendly 10 lesson course on heart health education for American Indians has skill-building activities, reproducible handouts and idea starters.  Appendices include recipes and  Heart Health Educator training activities for program implementation.

Indian Health Service, Billings Area

Intercultural Cancer Council Promotes policies, programs, partnerships, and research to eliminate the unequal burden of cancer among racial and ethnic minorities and medically underserved populations in the U.S. and its territories.

Intertribal Deaf Council Preserves and carries out traditions, languages and cultures of First Nations deaf, deaf-blind and hard of hearing people. Provides information exchange, traditional and education activities, and awareness activities for non-Native and/or non-deaf people.

Minority Health Project. Works to improve the quality of available data on racial and ethnic populations, to expand the capacity of minority-health researchers to conduct statistical research and develop research proposals, and to foster a network of researchers in minority health.

Minority Nurse Resources and information pertaining to education, career development and minority health for the growing population of minority nurses in America.

National American Indian Housing Council supports tribal housing agencies in their efforts to provide culturally-relevant, decent, safe, sanitary, and affordable housing for native people in American Indian communities and Alaska native villages.

National Center for Cultural Competence at Georgetown University, increases the capacity of health care and mental health programs to design, implement and evaluate culturally and linguistically competent service delivery systems.

National Center on Minority Health and Health Disparities

National Coalition of Deaf People of Color Organization for African-American, Latino, Asian, (Native) American Indian, biracial, and multiracial individuals with deafness. Its goal is to train and educate professionals and students.

National Council of Urban Indian Health Supports and develops quality accessible healthcare programs for all American Indian and Alaska Natives living in urban communities through advocacy, training, education and leadership development.

National Indian Council on Aging (NICOA) serves as advocate for the nation’s estimated 296,000 American Indian and Alaska Native elders. The NICOA strives to better the lives of the nation’s indigenous seniors through advocacy, employment training, dissemination of information, and data support.

National Indian Health Board (NIHB) represents Tribal Governments operating their own health care delivery systems through contracting and compacting, as well as those receiving health care directly from the Indian Health Service. The NIHB is a non-profit organization that conducts research, policy analysis, program assessment and development, national and regional meeting planning, training and technical assistance programs, and project management. Services are provided to tribes, area health boards, tribal organizations, federal agencies, and private foundations.

National Minority AIDS Council

National Native American Emergency Medical Services Association for first responders, emergency medical technicians, emergency nurses, and emergency physicians.

Native American Cancer Research Native American owned and operated non-profit organization implements cancer primary prevention, secondary prevention, risk reduction, screening (early detection), education, training, research, diagnoses, control, treatment, support, quality of life, and / or studies of cancer among Native Americans. Primary support is from federal agencies (e.g., the National Institutes of Health) and national organizations (e.g., the National Susan G. Komen Breast Cancer Foundation).

Native Circle at the Mayo Clinic is a resource center providing cancer-related materials to health care professionals and lay people involved in the education, care and treatment of American Indians and Alaska Natives.

“Understanding Disabilities in American Indian and Alaska Native Communities: Toolkit Guide”  National Council on Disability publication provides information about disabilities, Indian tribes, and resources. Also suggests ways to improve services, provide protections, and tap resources in local tribal communities for people with disabilities. Focuses primarily on health care, independent living, education, vocational rehabilitation, housing and transportation.

University of Oklahoma Health Sciences Center, College of Dentistry – Native American Center of Excellence Consortium.

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Neurological Conditions:

American Association of Spinal Cord Injury Nurses

Brain Injury Association of America

Brain Injury Association of Montana

Center for Neuroscience and Behavioral Medicine. Treats illnesses involving a child’s psychological well-being, brain and nervous system.

Dystonia Medical Research Foundation  The Foundation advances research into the causes and treatments of this neurological disorder, builds awareness of dystonia in the medical and lay communities, and sponsors patient and family support groups and programs.

Epilepsy Foundation. Features a “channel” aimed at health care professionals who can help people with epilepsy live better lives.  Content includes assessment, planning, treatment, populations, and resources.

Multiple Sclerosis Coalition This advocacy and education organization is an affiliation of independent MS organizations dedicated to the enhancement of the quality of life for all those affected by MS. The vision of the founding members, which include the Consortium of MS Centers, the Multiple Sclerosis Association of America, and the Multiple Sclerosis Foundation, is to improve the quality of life for those affected by this disease.

National Institute of Neurological Disorders and Stroke.

National Rehabilitation Hospital  Specializes in traumatic brain injury, cardiac rehabilitation, orthopedic rehabilitation, spinal cord injury, and stroke recovery.

National Resource Center for Traumatic Brain Injury

Tardive Dyskinesia Center Tardive dyskinesia (TD) is a movement disorder caused by taking certain neurological medications. TD is a result of damage to the bodily systems that process dopamine, and is typically caused by exposure to certain neurological medications – including Reglan. The symptoms of TD are irreversible and incurable, and mimic those of Parkinson’s disease. Tardive dyskinesia victims have involuntary, repetitive movements which often continue after the drug is no longer used. The center has the most up-to-date information on Tardive Dyskinesia Treatment options. Additionally, it distributes free wristbands to all users in hopes of raising TD awareness.

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Prescription Drug Assistance Programs:

Centers for Medicare and Medicaid Services

How the Coverage Gap works for People with Medicare Prescription Drug Plans Tip sheet for partners who work with people with Medicare and contains several questions and answers related to the coverage gap.

Part D Information for State Policymakers (3rd document in series)

Point-of-Sale Facilitated Enrollment (POS FE) Process: Four Steps for Pharmacists

MedLearn Matters  Articles for Physicians & Other Health Care Professionals, and Pharmacists and Other Pharmacy Professionals with information about the Medicare prescription discount card and $600 credit.

NeedyMeds.com Provides information about patient assistance programs and other programs designed to help those who can’t afford their medicines.

Partnership for Prescription Assistance  Brings together America’s pharmaceutical companies, doctors, patient advocacy organizations and civic groups to help low-income, uninsured patients get free or nearly free brand-name medicines.  The Partnership offers a single point of access to more than 275 public and private patient assistance programs, including more than 150 programs offered by pharmaceutical companies.

Partnership for Prescription Assistance – Montana Chapter Patients and service providers may call 888-477-2669 or visit the web site.

Pharmaceutical Research and Manufacturers of America Provides the Directory of Prescription Drug Patient Assistance Programs. These programs provide prescription medicines free of charge to physicians whose patients might not otherwise have access to necessary medicines. Under the entry for each program is information about how to make a request for assistance, what prescription medicines are covered, and basic eligibility criteria.  Also see http://www.helpingpatients.org

Understanding Changes in Prescription Drug Coverage for People with Disabilities on Medicare: A Guide for People with Disabilities, Benefits Counselors, Disability Organizations and Others On Transitioning to the Medicare Part D Prescription Drug Benefit  Reading this guide should enable individuals to better understand the changes in their prescription drug coverage and what key steps they can take to ensure that their prescription drug needs are met. The focus is on issues of particular importance to people who are dually eligible, although much of the information is critical for all Medicare beneficiaries with disabilities.

Together Rx Access Free prescription savings program for eligible individuals and families who lack prescription drug coverage and are not eligible for Medicare. Most cardholders save 25-40% on brand name and generic drugs.

Volunteers in Health Care: RxAssist: Designed to help health care providers locate programs for which their patients might qualify.

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Pulmonary Conditions:

American Lung Association. Provides information on asthma, living with lung disease, tobacco control, and occupational and environmental risks.

Montana Tobacco Use Prevention Program:

Montana Tobacco Use Prevention Plan, Extended through 2010

National Center for Environmental Health

National Center for HIV, STD, and TB Prevention

National Heart, Lung, and Blood Institute (NHLBI)

National Institute of Allergy and Infectious Diseases (NIAID). Conducts research aimed at developing better ways to diagnose, treat and prevent many infectious, immunologic and allergic diseases.

National Institute of Environmental Health Sciences (NIEHS).

Online Guide to Quitting includes tobacco cessation resources, expert advice and support, referrals to local resources, tools for individuals and professionals, and more.

Smoking Cessation Leadership Center is a national program office of the Robert Wood Johnson Foundation, with support from the American Legacy Foundation. SCLC aims to decrease smoking rates and increase the number of health professionals who help smokers quit. The Center partners with dental hygienists, nurses, pharmacists, emergency physicians, hospitals, labor unions, family physicians, the Veterans Health Administration and myriad other groups to increase cessation rates and cessation interventions.

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Rare Disorders:

GeneTests Based at the University of Washington, GeneTests is a free, NIH-funded medical genetics information resource for physicians, other healthcare providers, and researchers. The site offers expert-authored disease reviews, international directories of genetic testing laboratories and genetics/prenatal diagnosis clinics, and an illustrated glossary.

Genetics Home Reference National Institutes of Health online portal offers parents and physicians consumer-friendly information on over 200 genetic disorders and related genes. The site features an illustrated tutorial that explains the basics of genetics and includes a glossary of genetics terms. The lay-friendly site is particularly helpful to parents whose newborns have been detected with a genetic condition, and are looking for easy-to-read information on specific conditions.

National Organization on Rare Disorders  Has a database of rare disorders, a prescription assistance program, and offers a free, unique online community service for rare-disease patients, their families, and caregivers.

Velo-Cardio-Facial Syndrome Educational Foundation, Inc.

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Skin Conditions:

National Center for Environmental Health

National Institute of Allergy and Infectious Diseases (NIAID). Conducts research aimed at developing better ways to diagnose, treat and prevent many infectious, immunologic and allergic diseases.

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)

National Institute of Environmental Health Sciences (NIEHS).

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Substance Abuse:

Benefis Healthcare – Behavioral Health Program (Great Falls) Addiction Treatment Center offers state-of-the-art addiction-counseling services for adults and adolescents.

Montana Tobacco Use Prevention Program:

Montana Tobacco Use Prevention Plan, Extended through 2010

National Alliance for Drug-Endangered Children supports a nationwide network of professionals serving drug endangered children by providing referrals to experts, updated research on topics concerning drug endangered children, and best practice information.

National Association on Alcohol, Drugs and Disability Works to improve access to substance abuse services for people with disabilities, provides information on prevention and treatment, and facilitates networking of individuals and organizations.

National Center on Addiction and Substance Abuse.

National Clearinghouse for Alcohol and Drug Information

National Drug and Alcohol Abuse Helpline helps individuals find a rehabilitation program for specific alcohol or drug addiction problem. Case workers are available 24 hours a day, 7 days a week.

National Institute on Alcohol Abuse and Alcoholism (NIAAA).

National Institute on Drug Abuse .

Nicotine Anonymous Non-Profit 12-Step Fellowship of men and women helping each other live nicotine-free lives.

Online Guide to Quitting includes resources, expert advice and support, referrals to local resources, tools for individuals and professionals, and more.

Smoking Cessation Leadership Center is a national program office of the Robert Wood Johnson Foundation, with support from the American Legacy Foundation. SCLC aims to decrease smoking rates and increase the number of health professionals who help smokers quit. The Center partners with dental hygienists, nurses, pharmacists, emergency physicians, hospitals, labor unions, family physicians, the Veterans Health Administration and myriad other groups to increase cessation rates and cessation interventions.

Substance Abuse and Mental Health Services Administration .

Center for Substance Abuse Prevention.

Center for Substance Abuse Treatment.

State Profiles of Mental Health and Substance Abuse Services in Medicaid  Summary of each states’ coverage of behavioral health in Medicaid and in the State Children’s Health Insurance Program (SCHIP).

Substance Abuse Resources and Disability Issues Program, Wright State University Conducts research, provides collaborative consultation and treatment, and conducts training on the intersection between substance abuse and disability conditions.  Considers all physical, cognitive and emotional disabilities and their correlations with substance abuse.  SARDI also investigates disability issues arising as sequellae of substance abuse

Technical Assistance Collaborative  National non-profit organization works to achieve positive outcomes on behalf of people with disabilities, people who are homeless, and people with other special needs by providing state-of-the-art information, capacity building, and technical expertise to organizations and policymakers in the areas of mental health, substance abuse, human services, and affordable housing.

Tobacco Information and Prevention Source at the National Center for Chronic Disease Prevention and Health Promotion

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Traumatic Brain Injury:

National Association of State Head Injury Administrators.

National Resource Center for Traumatic Brain Injury provides relevant, practical information, intervention programs and assessment tools for professionals, persons with brain injury, and family members.

Perspectives Network focuses on positive communication between persons with brain injury, family members/caregivers/friends of persons with brain injury, professionals who treat persons with brain injury, and community members. The goal is to create positive changes and enhance public awareness and knowledge of acquired/traumatic brain injury.

Rehabilitation Research and Training Center on Community Integration of Persons with Brain Injury at the The Institute for Rehabilitation and Research. Provides National Database of Educational Resources on Traumatic Brain Injury.

Tip Sheet-Improving Social Skills after Traumatic Brain Injury

Traumatic Brain Injury Technical Assistance Center Helps TBI State Demonstration Grant recipients implement statewide systems that ensure access to comprehensive and coordinated TBI services. Site includes TBI Resource Database.

Traumatic Brain Injury Toolkit PDF file. Designed to support diagnosis and management of both mild and acute traumatic brain injury (TBI). There are two sections — one for health care providers and the other for individuals with mild or acute TBI and their families.

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Women with Disabilities:

Access to Health Care by Women with Disabilities

Center for Research on Women with Disabilities – Baylor College of Medicine web site serves as a clearinghouse for information about the health and wellness of women with disabilities, and shares information generated from 13 years of studies.  Includes information from, and links to, research conducted around the country and serves as a networking forum for researchers, educators, clinicians, students, women with disabilities, and advocates.

North Carolina Office on Disability and Health Publishes:

    • Providers’ Guide to Care of Women with Physical Disabilities and Chronic Health Conditions Published by the North Carolina Office on Disability and Health and designed for clinicians to improve their knowledge and practice in providing care to women with physical disabilities and chronic health conditions. It includes information on access to general medical care, removing common barriers, comprehensive reproductive health care and health promotion and wellness.

    • Women Be Healthy Curriculum Developed by the North Carolina Office on Disability and Health, this curriculum teaches women with intellectual disabilities to become more active participants in their health care. Its primary emphasis is teaching women about reproductive health and breast / cervical cancer screenings. The curriculum focuses on: health education, anxiety reduction and empowerment training.

    • Partners in Health Care: Women with Disabilities and their Health Care Providers Publication of the North Carolina Office on Disability and Health is filled with tips for health care providers in promoting the health of people with cognitive and physical disabilities. Suggestions are given for people with disabilities on ways to help build positive partnerships with their medical care providers.

Pathway™ Series: Breast Care CD-ROM A training series from Western University of Health Sciences about providing preventative health care services for disabled women.

 

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