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Click on map
for Ohio's yellow pages
 OhioNortheast HDSA Chapter
Northeast Ohio Chapter zip codes starting with 44xxx |
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Chapter Contact Information:
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President:
Email:
Address:
Phone
Toll Free
Info Email
Website
Newsletter |
Don Barr
dbarrhome@aol.com
7059 Old Mill Road
Chesterland, Ohio 44026
440-423-4372
440-423-0515
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Akron Area
When: Call for details
Time: 7:00 - 8:30 p.m.
Where: Taylor Memorial Public Library
2015 Third
Street
Cuyahoga Falls, Ohio
Contact: Don Barr
Phone: 440-423-4372
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Cleveland Area
When: 3rd Monday of month
Time: 7:00 - 8:30 p.m.
Where: UH Chagrin Highlands Medical
Center
3909
Orange Place
Orange Village, OH 44122
Contact: Don Barr
Phone: 440-423-4372
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Physician's/Genetic Testing |
Physician's
John P. Conomy, M.D., J.D.
2709 Franklin Blvd., 4th Floor
Cleveland, Ohio
44113
Phone: (216) 363-2200
Joseph P. Hanna, M.D.
Director, Department of Neurology
MetroHealth
Medical Center
2500 MetroHealth Drive
Cleveland, Ohio 44109-1998
CWRU/University Hospitals of Cleveland
Hanna House
11100
Euclid Avenue, Suite 503
Cleveland, Ohio 44106 |
Genetic Testing
Center for Human Genetics
University Hospitals of
Cleveland
11100 Euclid Avenue
Cleveland, OH 44106
Contact: Arthur Zinn, MD, PhD
Phone: (216)
844-3936
Fax: (216) 844-7497
Genetics Center
MetroHealth Medical Center
2500 MetroHealth Drive
Cleveland,
OH 44109-1998
Contact: Carol A. Crowe, M.D.
Phone: (216) 778-4323
Genetics Center Children's Hospital
1 Perkins Square
Akron,
OH 44308
Phone: (330) 543-8792
Phone: (330) 543-8792
Fax: (330) 543-3677 |
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
Contact:
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
patients
Adult Care Facilities
Ohio Department of Health Adult Care Facilities
246 North High Street
P.O. Box 118
Columbus,
OH 43216-0118
Hospices
Ohio Department of Health Hospices
246 North High Street
P.O. Box 118
Columbus, OH 43216-0118
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Have An Emergency?
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State Resources
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State Contact Information:
Abuse
Adults
PASSPORT - provides in-home alternatives to nursing home care for low-income seniors 60 and over.
Advocacy
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.
Caregiving
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.
Children
Ohio Kids Card ProgramArea 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
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.
Disabilities
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.
Guardianships - The Ohio Legal Rights Service (OLRS) has written many publications
about different issues that affect people with disabilities.
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Estate Planning continued
Financial
Golden Buckeye Card - anyone age 60 or better, or who are age 18 - 59 and have a Medicare-certified
disability.
Genetics
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.
Insurance
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
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
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
Health
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.
Legal
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.
Medicines
Golden Buckeye member:
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.
Therapy
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.
Transportation
Veterans
Locate VA healthcare by counties in Ohio.
Vital
Vital Records |
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Miscellaneous State Support |
Patient Advocacy Foundation State Locator
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! |
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.
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GovBenefits.gov 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.
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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
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 DefinitionsAn 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.
Insurance
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. |
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