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 Nebraska's yellow pages
 Nebraska State
                              Flag  Nebraska 
Nebraska is covered by the Iowa HDSA Chapter
Special Notices
Check -> HDSA's National Events Calendar  for current events in this area.
Support Groups
This group no longer meets
Lincoln, NE 68504
Alt. Contact
2nd Monday of the month
6:00 p.m.
Village Inn Restaurant 
78th & Dodge Streets
Omaha, NE
Cathy McNeil
Sandy Lozier
HD Experienced:
Dr. Markopolou
University of Nebraska Med. Center
P.O. Box 988480
Omaha, NE  68198-8480
Phone:  402-559-4086
(Dr.'s name pronounced MarcoPolo)
Need your input
ACLF's/Adult Day Centers/Nursing Homes

Nebraska State Long-Term Care Ombudsman   Department on Aging
P.O. Box 95044
301 Centennial Mall-South
Lincoln, NE 68509-5044
Phone: (402) 471-2306
FAX:     (402) 471-4619

The Program serves as the advocate for long-term care facility residents in Nebraska.  Ombudsmen investigate any concern on behalf of a long-term care facility resident and mediate and negotiate to resolve the complaint to the resident's satisfaction.
1-800-358-8802 or 402-471-9310 in Lincoln
Individuals who live in Adult Family Homes may require supervision and assistance with bathing, shaving, and dressing. They don’t require on-going medical treatment and are able to self-administer medications.
Waiver Authorized Assisted Living in Nebraska
Medicaid-eligible individuals, who require more intensive, nursing home levels of care, can get financial assistance in paying for assisted living services from the Waiver program.
Assisted Living Services Provider Handbook
In this section, assisted living providers will find valuable information about becoming a service provider, billing, expectations, and sample forms.
Assisted Living Complaints
This section provides information on sources for reporting complaints or concerns regarding Nebraska assisted living facilities.
Know The Facts
Nebraska's Guide To Assisted Living-PDF document. Advice on how to choose an Assisted Living Facility in Nebraska.
HD Experienced:
Valley Valhaven Nursing Center
P.O. Box 357
300 West Meigs St.
Valley, NE  68064,
Phone:  402-359-2533
Beverly Healthcare of Plattsmouth
602 So. 18th St.
Plattsmouth, NE  68048
Phone: 402-296-2800
Have An Emergency?
Dial 2-1-1 or  visit: 2-1-1 Nebraska Infoline
Click here -> Nebraska United Way to find programs that might help you.
State Resources
Nebraska Homepage
Hotline 1-800-652-1999
Hotline 1-800-876-6238
Hotline 1-800-652-1999
Care Management-assists frail, older individuals to remain in their own homes for as long as possible. A care manager completes a comprehensive assessment and with the individual develops a plan of care to meet identified needs.
Services for Seniors-some programs available for disabled adults also.
Lifespan Respite Subsidy-Providing care for an individual with special needs can affect the mental and physical well-being of the caregiver. Eligibility is determined based on financial guidelines.
For help in locating a provider, call
1-866-RESPITE (737-7483)
Aid to Dependent Children (ADC) - provides cash assistance to low-income families with minor children. ADC income is used to pay for family living expenses like rent, utilities, food, clothing, and other necessities.
Disabled Children's Program (DCP) - provides funding to help families care for their children with disabilities at home. A family focused assessment process determines the need for services.
Early Intervention Medicaid Home and Community-Based Waiver - offers home and community-based services to infants and toddlers who have care needs which meet a care level typically provided in a nursing facility.
Out-of-Home Services for Children with Disabilities and their Families - Where Can I Find Services in the Community to Help My Family Member Remain at Home?
Transportation for Children with Disabilities - The programs listed on this link, under each setting, can help arrange and finance the services described.
Aged and Disabled Medicaid Waiver Resources
This section provides listings of Aged & Disabled Medicaid Waiver staff throughout Nebraska.
Disabled Persons and Family Support (DPFS) Program - coordinates and purchases services and items to assist employed adults with disabilities to maintain their independence.
Older Adults and Adults with Disabilities - Case Management Services for Adults

Estate Planning
Food Stamps - Food Stamp benefits are given free of charge to households that meet the  program guidelines for income and resources. A household can be one person or a group of people who purchase and prepare meals together.
-> program guidelines [in PDF]
Energy Assistance - available to help those with limited incomes offset the cost of heating and cooling their homes.
Financial continued
Reverse Mortgages-a  home equity conversion mortgage allows homeowners to borrow against the equity or value in their homes without giving it up and without making monthly payments.
Social Services Block Grant (SSBG) - provides services to low-income people. Services, like chores, adult day care, respite, transportation, etc.  are intended to enable individuals to be as self-sufficient as possible.
HIPAA Online - Nebraska Health and Human Services System HIPAA information and tools
Long-Term Care Insurance - If you would like to have assistance in reviewing the contents of a policy, contact the Nebraska Health Insurance Information, Counseling and Assistance Program (NICA).
Kids Connection (Children's Health Insurance Program, CHIP) Customer Service Center
Phone:  402-390-1814
Outside of Omaha - 1-800-356-3485
People with HD may qualify for Nebraska's
Comprehensive Health Insurance Pool (CHIP) 
Medicaid - Medicaid generally pays the Medicare co-payments and deductible Medicaid.It also covers the costs of nursing facilities, prescription drugs, inpatient/out-patient hospital services, rural health clinic services, laboratory and X-ray services, and physicians' assistants.  Nebraska rules relating to Medicaid eligibility vary depending upon several factors.  Services Covered by Nebraska's Medicaid
Documents in PDF format:
 NICA Program-The Nebraska Health Insurance, Information, Counseling and Assistance Program (NICA) provides information and counseling to older Nebraskans regarding Medicare, Medicaid, and health insurance.
QMB/SLMB Program-Some states are required to pay the Medicare premiums, co-payments, and deductibles for a special class of Medicare beneficiaries called Qualified Medicare Beneficiaries. Nebraska covers this group under its Medicaid program.  As a result, services not covered by Medicare, including pharmacy, optical, and dental are covered. 
Supplemental Security Income-Supplemental Security Income (SSI) is a federal cash benefit program designed to guarantee a minimum monthly income to those who are either 65 or older, blind, or disabled and who have limited incomes. 
Mental Health
Helpline  1-800-836-7660
Childrens services - funds outpatient treatment, middle intensity services including day treatment, respite care and school-based wraparound.
Suicide Prevention - Hotline 1-800-784-2433
Vital Records
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.
Nebraska Consumer's Guide To Getting and Keeping Health Insurance. This 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.
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.