Huntington's Disease Support Information


Index~HD Search
Convention Scholarship Fund
State HD Support
District of Columbia
New Hampshire
New Mexico
New York
North Carolina
North Dakota
West Virginia
Washington State
Pennsylvania~Delaware Valley
Rhode Island
South Dakota
Wyoming Non-HD Specific Caregiver Support
Miscellaneous State Resources
Other Resources
Click on map for Ohio's yellow pages
Ohio State Flag 
Ohio Valley HDSA Chapter
 Serving  zip codes starting with 45xxx plus West Virginia
Chapter Contact Information:
Dan Leugers
3537 Epley Lane
Cincinnati, OH 45247
(513) 741-4372
(513) 741-4645
Social Worker Cincinatti:
Mary Beth Bialick,MSW
(513) 741-4372
Special Notices
Check out HDSA's National Events Calendar for current events that may be taking place in the Ohio area.
Support Groups
When:      3rd Saturday of each month
Time:        11:00 AM
Where:     Drake Hospital
Contact:   Mary Beth Bialic, LISW  
Phone:     513-741-4372
When:      2nd Wednesday every month
Time:        7:00 PM
Where:     Fairview Methodist Church
                 Corner of Fairview & Cataba
Contact:   Mary Beth Bialic, LISW   
Phone:     513-741-4372
Center of Excellence/Genetic Testing
Center of Excellence
HDSA Center of Excellence
Ohio State University
See the CoE listed on the Ohio~Central
page. CoE is located in Columbus, OH, 43210
Contact:   Karen Betcher, RN
Phone:      (614) 247-6851
Fax:          (614) 293-4974
Director:   Dr. Sandra K. Kostyk
Phone:      614-688-3675
Physicians-HD Experienced
Need your input.  You can also call Mary Bialic at 513-741-4372  for information
Genetic Testing
Children's Hospital  Medical Center
Human Genetics Division
3333 Burnet Avenue
Cincinnati, OH 45229
Contact:   Karen Huelsman, MS
Phone:     (513) 636-3871
Fax:         (513) 636-7297
Long Term Care
Department of Aging
50 West Broad Street - 9th Floor
Columbus, OH 43215-5928
Phone:  (614) 644-7922
FAX:     (614) 466-5741
Long-Term Care Consumer Guide -
This guide provides information about all types of long-term care services throughout the state. The guide includes information such as size, location, services offered, customer satisfaction, regulatory compliance, performance and quality indicator data (based on criteria from the Centers for Medicare and Medicaid Services) about all nursing homes in Ohio. Consumers can easily compare data for two or more facilities.
Taking Charge ONLINE: - Being a long-term care consumer : Get the most as a long-term care consumer...How should I shop for long-term care?
HD Experienced:
OakPointe Nursing and Rehabilitation Center
130 Buena Vista Street
Baltic, OH 43804
Kathy Weaver, Director of Social Services or
Ruth Anne Jones, Director of Community  Services
Phone:  330-897-431       
Fax 330- 897-0515     
Experienced in working with all stages of HD 
Adult Care Facilities
Ohio Department of Health Adult Care Facilities
246 North High Street
P.O. Box 118
Columbus, OH 43216-0118
Ohio Department of Health Hospices
246 North High Street
P.O. Box 118
Columbus, OH 43216-0118
Have An Emergency?
Dial 2-1-1 or visit  2-1-1 Ohio Collaborative 
State Resources
Ohio State Homepage
State Contact Information:
Information regarding health care providers that are licensed and/or Medicare/Medicaid certified by the Ohio Department of Health. Obtain information such as general demographics, State of Ohio license status and last annual Medicare/Medicaid certification survey date.
PASSPORT - provides in-home alternatives to nursing home care for low-income seniors 60 and over.
Assistive Technology
Assistive Technology of Ohio (1992)
445 East Dublin Granville Rd., Building L
Worthington, OH 43085
Executive Director: Douglas Huntt, Ph.D.
Phone: 614.293.9132
Fax:     614.293.9127
Assistive Technology - Publications from the Ohio Legal Rights Service (OLRS) Also refer to the Frequently Asked Questions: Assistive Technology
Technology Resource Center - Ohio Easter Seals Technology Resource Center (ES/TRC) empowers people with developmental or acquired disabilities by providing services using assistive technology.
Tetra Society of North America - Columbus Chapter - The purpose of Tetra is to recruit skilled volunteer engineers and technicians to create assistive devices for people with disabilities.
Family Advocate  - provides policy guidance and strategic planning support to the department on parent/family and advocacy issues. Works with county boards and professionals on behalf of consumers and their families, seeking solutions through inclusion and collaboration. 
The FSS supports families in their efforts to care for individual family members in their homes. The support provided with these funds enhances the quality of life of the entire family. The supports and services provided by FSS include respite care by specially training providers or person chosen by the family, adaptive equipment, home modifications to accommodate the family member with disabilities, special diets, or other services or items that are individualized to meet the needs of each family.
Ohio Kids Card Program
Area businesses give discounts to kids under the age of six who have an Ohio Kids Card. To apply, visit the Website, go to your public library, or call 1-800-755-4769.
Special Education - The Ohio Legal Rights Service (OLRS) has written many publications about different issues that affect people with disabilities including this section on Special Education where you can find info on First Steps: Early Intervention Services for Infants and Toddlers with Delays or Disabilities, Negotiation Skills For Parents: How To Get The Special Education Your Child With Disabilities Needs, Transition Planning for Students with Disabilities and more.
Frequently Asked Questions: Special Education.  Find answers to questions about special education services, as well as a series of "Quick Facts" from OLRS about special education and advocating for your child's special education needs.
Dental Health - Through programs such as OPTIONS, BOHS works to improve access to dental care by increasing the sources of dental care available to underserved Ohioans.
Dental Health Care: General information about dental health care, including links to Ohio and national resources.
Bureau of Vocational Rehabilitation (BVR) - assists people who have physical, mental and emotional disabilities by providing vocational rehabilitation and other services.
Home Adaptation - Home modifications are adaptations made to a home to allow for easier and safer access due to specific needs resulting from a disability. This section covers some of the considerations to think about when considering home modifications.
Estate Planning
Advance Directives - In Ohio, "advance directives" is the term used to describe three types of legal documents you can complete to express your wishes regarding your future health care: (1) a durable power of attorney for health care (POA), (2) a declaration for mental health treatment, and (3) a living will.
Estate Planning continued
Guardianships - The Ohio Legal Rights Service (OLRS) has written many publications about different issues that affect people with disabilities.
Other Related FAQS
Golden Buckeye Card - anyone age 60 or better, or who are age 18 - 59 and have a Medicare-certified disability.
Genetic Services -provides comprehensive care and services to people affected with, or at risk for genetic-related disorders. Genetic services include, but are not limited to genetic counseling, education, diagnosis and treatment for all genetic conditions. Persons in Ohio who would like genetic counseling, or other genetic treatment services, may contact one of the regional centers, or may be referred by their primary care physician.
Ohio Guide To Getting and Keeping Health Insurance PDF Document - The Guide summarize your protections, and so may not answer all of your questions. It is not a substitute for legal, accounting, or other professional advice.
The laws of Ohio and of the United States prohibit discrimination based on disability in housing, employment and in other areas. What about health insurance?
Medicaid - In Ohio, the Department of Job and Family Services (ODJFS) administers the state's Medicaid program.

Ohio Medicaid Resources

Waivers  -Home and Community Based Services Waivers (HCBS) administered by the Ohio Department of MR/DD provide services to persons who are mentally retarded and/or developmentally disabled.  The  Department  administers two HCBS waivers: The Residential Facility Waiver (RFW) and the Individual Options (IO) Waiver.
Medicare Premium Assistance Program  - This program helps people eligible for Medicare who have limited income and assets get help in paying the cost of one or more of the following: Medicare premium(s). Medicare deductibles and Medicare coinsurance
Social Security Disability Benefits
Visit the Ohio State Bar Association Web site to find a lawyer in your area.
Legal Rights Services - The mission of the OLRS is to protect and guarantee the human, civil, and legal rights of Ohioans with disabilities.
Golden Buckeye member:
Insurance and Prescription Coverage: Resources for finding financial and advocacy assistance for health insurance and prescription coverage.
Mental Health
Developmental Centers - The  centers are comprised of 76 separate licensed and ICF/MR-certified houses, specialized medical  care, as well as a variety of therapeutic and recreational activities.
Ohio Speech-Language-Hearing Association - OSLHA members provide services for the evaluation and rehabilitation of communicative disorders.  Members work in a variety of settings including: clinics, health care facilities, hospitals, private practice, schools, and universities.
Locate VA healthcare by counties in Ohio.
Miscellaneous State Support
Guardianship Programs
A listing of guardianship programs in each state
Patient Advocacy Foundation State Locator
  L to W
Ensuring equal access to health care to all Americans. Find out what is available in your community.  Information available on (to mention only a few from the entire list): Children,  Children's Health Insurance Programs, Community Referral, Disability Services, Financial Assistance, Food Stamps, Health Care, Insurance, Legal, Medication/Drug Assistance and Special Needs
Private Fuel Funds
There are non-federal dollars available from local fuel funds, which frequently are contributed by your neighbors when they pay their utility bill. Ask the state energy assistance office for the local phone number of the fuel fund nearest your residence.
A directory of official state, county and goverment websites
Select from the list of State Benefit Program Contributors to read more about each State's benefits. To determine if you may be eligible to receive benefits you must select from the list of State Benefit Program Contributors and then click "am I eligible?" to begin the questionnaire.
State Resources-information or links related to Assistive Technologies, Disability Resources, Domestic Violence Legal Information, Family Legal Guides, Family Services, Guardianship Programs, Health & Human Services Quick Locators, Legal Assistance, Legal Forms - State & Federal, Long-Term Care Ombudsman Programs, Medicaid, Medicaid Waiver Programs, Social Security Offices, Summer Camp Programs, United Way~Local Support and more.
United Way-Search By Zip Code will provide you with information on the United Way in your area.  If they have a website, they usually have a section called "How Do I Get Help?"  Click on it and look for their "Quick Guide" (To Human Services) for help in your area. You can print it out.  Most guides are in PDF format and are a great resources to put on your refrigerator!
Other Resources
 "Adapting Motor Vehicles For People With Disabilities" – a National Highway Traffic Safety Administration’s brochure
Applying For Government Benefits
Dental-Even if you cannot pay for dental care there are ways in which to receive help. Contact the American Dental Association (ADA) (1-800-621-8099) to learn about dentists who assist individuals on fixed incomes by offering their services at reduced fees. is a screening tool provided by the federal government to help you find government benefits that you may be eligible to receive.
There is no way to cover all of the issues one might possible need to consider when selecting insurance coverage. Provides information on Free Care, General Information, Children, Claims & Insurance Rates, Life Insurance, Long Term Care, Medicaid/Medicare and Pre-Existing Conditions and more.
Locate Missing Records- families who have become responsible for another's affairs may need to request copies of lost records needed to apply for benefits like Medicare or Medicaid, to make insurance claims, or to manage affairs. Resources in USA, UK and Canada.
Other Support Resources
Activities of Daily Living 
Activities of daily living are a commonly used term in the health care and professional caregiving world to describe a person's ability to care for him or herself. In a progressive disease, such as Huntington's, measuring your loved one's Daily Living capabilities on a frequent basis (quarterly, semi-annually or annually) can provide you and their primary care physician the ability to evaluate the severity of the changes and develop a plan of care that allows for meeting both the physical and psycho-social needs of the care recipient.
Information covered on this link is resources which might help HD families apply for Government and State disability benefits; how to estimate your benefits; makes appeals; how your physician can assist you; and links to information for professionals such as HDSA Chapter Social Workers as well as other resources. The information is designed to provide general advice only.
Communication/Speech in Huntington's Disease. Currently have descriptions of several things causing problems in HD such as Aphasia, Apraxia, Miscommunication, Cognitive Issues, plus many more. More to be added when time is available.
Looking for prescription drug insurance? Find information on prescription drug plans and plans. Look up any medication prescribed, check on Alternative medicines, and learn about safety issues. Learn about the "sliding scale" if you don't have insurance. See the "New Drug Checklist-Q&A's", "Keeping Track of Side Effects" Over-The-Counter stuff and more. Also excellent links to Rx Programs, Benefit Check Up, Medicare, and discount pharmaceutical drug discount programs. Information contained on the individual pages of this site is provided for your reference and convenience only.
Avoiding Probate, Conservator~Guardianship, Estate Planning, Living & Other Trusts, Wills & Beneficiaries, Employment Issues, Financial Aids. Divorce Issues, Legal, Emergency Planning and more.
What Is A Feeding Tube? When To Consider One. Feeding Tube Decision in HD, Tube Feeding in Advanced Stages of HD,Using Baby Foods, Oral & Dental Care, Jean Miller Articles & Checklist and a ton of resources including charts to help in care.
This website provides helpful forms to families living with Huntington's Disease to help organize their daily caregiving needs. It contains DOZENS of forms you can use everyday, most of them are in Word format for easy printing and sharing!
HD Medical Definitions
An accumulation of definitions I found which are sometimes used to describe symptoms of/or tests for HD or discuss other diseases or condition which have symptoms similar to Huntington's Disease. The list is very long, but interesting!
Huntington's Disease Symptoms
It is extremely important that you are familiar with all the possible symptoms, which might be affecting the quality of life for the person with HD. The symptoms appearing in this section can either be related to Juvenile Huntington's Disease, Huntington's Disease in adults, some other condition, or be caused by a side affect to medication(s). This site is still being updated and developed.
There is no way to cover all of the issues one might possible need to consider when selecting insurance coverage. Provides information on Free Care, General Information, Children, Claims & Insurance Rates, Life Insurance, Long Term Care, Medicaid/Medicare and Pre-Existing Conditions and more. If you would like more information on a particular subject, use one of the Search Engines to help you find it.
Information here is either directly about Juvenile Huntington's Disease, or other information, which will hopefully be helpful to families who have a child with JHD or are concerned about their child having JHD. Information from the old JHD site, which I can no longer access to make changes, is being moved here as time permits. When this is completed, this site will be deleted.
Caregiving articles written by Jean Miller, Betty Ann McDorman, Louise Wilkinson and others plus links to other articles.
There are quite a few articles that describe the various "stages" of HD. This site provides a Compilation of The [all] Stages Of HD. There are some resources available at the end of "stage" plus each one is in Word format for printing or sharing.
This section deals specifically with Swallowing problems associated with HD. It covers the description of problems in swallowing, therapies and products, questions to ask/FAQS, articles written specifically for HD, Safety & Warning Signs, brochures, special diets, the 5 levels of food consistency, testing procedures used to determine swallowing capacity, and more. Many items are available in Word for printing or sharing. Additional information and tips will be added as time permits.