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

Index~HD Search

 Click on map for Delaware's yellow pages
Delaware State Flag 
There is no  HDSA Chapter in Delaware.  See Maryland  or Virginia for the closest ones .  Besides the locations below, if you'd like to start an HD peer led group, read How To Start Your Own HD Support Group
Special Notices
Check  HDSA's  National Events Calendar for current events that may be taking place in Delaware.
Support Groups
Call for dates
10:00 am  
Christiana Medical Center
4744 Ogletown-Stanton Road
Newark DE  
2nd Monday every other month
7 pm-9 pm
Bay Health Medical Center
Milford Memorial Hospital
21 W. Clarke Ave
Milford DE   
Physicians/Genetic Testing
Physician's HD Experienced:
need input
Genetic Testing:
need input
Long Term Care
Division of Services for Aging and Adults with Physical Disabilities
Herman M. Holloway, Sr. Campus
Main Administration Building
1901 N. DuPont Highway
New Castle, DE 19720
Toll Free: 1-800-223-9074
TTY: (302) 453-3837
FAX (302) 255-4445
Investigates and resolves complaints made by (or on behalf of) residents of long term care facilities (for example, nursing homes). The program also provides volunteer opportunities for friendly visitors/advocates in nursing homes. Enforcement Information
See Frequently Asked Questions page for a list of nursing homes and assisted living facilities in Delaware.

How to Select Long Term Care
PDF Format / Text-Only Format

Adult Day Services - provides activities and assistance for people with physical and/or mental impairments. This service is for people who do not need 24-hour care in a nursing home, but who cannot be left alone for long periods of time.
Adult Foster Care  a housing option for low-income adults who meet specific medical, financial and social criteria who need some supervision and can no longer remain in their own homes.
Alzheimer's Day Treatment - Delaware residents with a diagnosis of of Alzheimer's Disease or related dementia, who are incapable of being left alone during the day. A non-residential, day program. Medical, recreational, and personal care services are provided.
Assisted Living - Elderly persons and adults with physical disabilities who meet financial and medical need criteria. Support for residents of assisted living usually includes personal services and light medical or nursing care. In Delaware, an Assisted Living Waiver pays part of the cost of assisted living care for those who qualify.  FAQS: What is assisted living and where can I find assisted living facilities in Delaware?)
Community Living Respite - Adults with physical disabilities aged 18 to 59 who live independently but require assistance from a full-time caregiver in order to remain independent.  Must be a resident of Sussex County.   Persons with disabilities participate in various community-based activities. The program gives participants the opportunity for personal, social, and/or educational enrichment outside the home.
- Residents of nursing homes in Delaware. Help identify, inform and assist nursing home residents, especially those who are Medicaid-eligible, who want to move to a community-based setting. The program offers individualized case management to accomplish this goal.
Delaware currently does not have a 2-1-1 in place.
State Resources
Delaware State Homepage
State Government
Toll Free: 1-800-223-9074 -  Through this program, persons can get information and be directed to appropriate programs, services, activities, events, and other community resources related to aging and disabilities in Delaware. This service is available not only to older persons and adults with physical disabilities, but also to family members, caregivers, service professionals, students, and any other interested persons.
Adult Protective Services - Specifically, the program serves persons who are aged 18 or over, who have a physical or mental impairment, and who are not living in a long term care facility (for example, a nursing home).
Assistive Technology
Attendant Services - Delaware residents aged 18 and older with disabilities who meet specific social, financial, and physical criteria.  Provides personal care and support services  so that they will be able to live in their own homes and communities. People participating in the program (or people making decisions for them) choose the services they need within certain guidelines.
CARE Delaware:
Caregiver Assistance-Respite-Education
PDF Format / Text-Only Format
Caregiver Support Groups - Listing of both local and on-line groups.
Caregiver Resource Centers
PDF Format / Text-Only Format
Case Management - Older persons aged 60 and older and adults aged 18 through 59 with physical disabilities. Helps older persons, persons with disabilities, and caregivers get connected with the services that they need. Case managers help in three ways: assessing (or evaluating) a person's situation and needs; working with individuals and their families to develop "care plans" to map out what kind of services an individual needs, how often they are needed, etc.; and  providing ongoing coordination to see that an individual's care needs are being met.
Emergency Response System - At-risk frail elderly or adults with physical disabilities who live alone or who are alone a good portion of the day. Also read: Avoiding Problems with Emergency Response Systems
Home Modification - Delaware residents 18 years of age or older who have a permanent or long-term physical disability.  There is a $10,000 lifetime cap. Pays for modifications (or changes) to be made to the home of a person with a physical disability to allow them to move around more freely in the home. An example of a home modification is the installation of a wheelchair ramp. Modifications are made to permanent residences only. Available only when no other funding source is available or when there is not enough money from another source to pay for the needed modifications.
Housekeeping - Delaware residents 18 years of age or older who live in their own home or apartment and who meet specific medical eligibility criteria.  Persons 18 to 59 years of age must also meet Medicaid long term care financial and income criteria. The service allows people to live in their own homes as long as possible. Specific housekeeping services include assistance with shopping, meal preparation, light housekeeping, and laundry. All services are provided by trained housekeepers.
- Delaware residents 18 years of age and older who met specific medical eligibility criteria and may also be required to meet certain income and resource criteria.  Personal care services are provided for persons who need help at home because of illness or disability. The services are designed to help a person maintain his or her household and continue living independently. Specific activities may include assistance with personal hygiene, meal preparation, shopping, light housekeeping, and other services.
- Mentally or functionally impaired persons (primarily elderly) who are in need of supervision and/or support in the activities of daily living in the absence of a primary caregiver.  Provides relief to primary caregivers  who give 24-hour-a-day care to someone in need. Respite care can be regularly scheduled (for example, once a week) or can be given from time-to-time, as needed by the family. Respite care can be provided at home or in a state-approved nursing home.   

Respite Care Service for Delaware Caregivers
PDF Format / Text-Only Format

Child Care - This service provides support for families with young children to enable the caretaker to hold a job, obtain training or meet special needs of the child.
Children's Community Alternative Disability Program - provides Medicaid coverage to severely disabled children who do not qualify for Supplemental Security Income (SSI) or other Medicaid qualifying programs because of their parents' income and/or resources.
Healthy Children - The Delaware Healthy Children Program is targeted to children under age 19 with whose family income is at or below 200% of the Federal Poverty Level (FPL) and who do not qualify for Medicaid.
Dental Transportation -  transportation is provided from school to dental clinics in the state service centers for eligible low-income children.
Family Visitation Centers - provides safe, neutral settings where children can maintain or re-establish a relationship with a non-custodial parent. The Visitation Centers provide monitored exchanges, supervised visitations and group visitations.
Herman M. Holloway, Sr. Campus
Main Administration Building
1901 N. DuPont Highway
New Castle, DE 19720
Toll Free: 1-800-223-9074
Phone: 1-800-223-9074
TTY: (302) 453-3837
FAX (302) 255-4445
Disabilities - continued
Assistive Devices - Adults with disabilites with an assessed need.  There is a per purchase cap of $10,000 and a lifetime cap of $25,000.  Funds are available for persons with disabilities to buy or rent new or used assistive devices. A few restrictions: an assistive device must directly promote independent action or communication; also, money is provided only when no other funds are available to cover the cost of the device.
Delware Assistive Technology Initiative - connects Delawareans with the tools they need to learn, work, play and participate in community life safely and independently. 
 drive hundreds of devices
-Equipment Exchange non-agency classified ad
Adult Life Skills -  Adults aged 18 to 59 years of age who have a physical disability which substantially affects their ability to function independently and carry out activities of daily living, and who live in New Castle County or Kent County. Helps persons with disabilities who want to learn the skills to live more independently by providing life skills training and "housing transition support" (help with the process of moving).
Estate Planning
Congregate Meals - Persons 60 years of age or older and their spouses regardless of age.  Also available to persons with disabilities under the age of 60 who reside in housing facilities where congregate meals are served
Delaware Money Management Program - Low-income seniors or adults with physical disabilities with liquid assets of no more than $30,000 and annual income no greater than $20,069  ($28,399 for couples). The program offers money management service to help those having difficulty budgeting, paying routine bills and keeping track of financial matters. The goal is to promote and prolong independent living for individuals who are at risk of losing their independence due to inability to manage their financial affairs. The program uses volunteers to assist individuals who do not have friends or relatives able or willing to help.
Food Stamps - a program that enables low-income families to buy a variety of food that is the basis for better nutrition.
Home Delivered Meals - Homebound persons aged 60 and over (OAA) or low-income adults with disabilities aged 18 to 59.  Delivers nutritionally-balanced, hot meals during the day to homebound persons. Some people also receive cold, bagged meals so that they will have food available in the evening as well.
Compassionate Care Hospice- Millsboro, Wilmington
Delaware Valley - Plymouth
Hospice of the Delaware-Dover, Georgetown, Wilmington.

A Consumer's Guide To Getting and Keeping Health Insurance in Delaware. 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.

HIPPA Privacy Information  - DSAAPD clients receive a form which contains information about HIPAA and their rights under this law.
Medicaid - furnishes medical assistance to eligible low-income families and to eligible aged, blind and/or disabled people whose income is insufficient to meet the cost of necessary medical services.
- Persons aged 18 and over who are financially and medically eligible for the Medicaid Nursing Home program.  The program includes services that allow a person to continue living in his or her home. Services include adult day care; emergency response system; orthotics and prosthetics; personal care; and respite. Nurses and social workers coordinate with participants and their caregivers to develop care plans that meet their individual needs.
Legal Services -Delaware residents who are 60 years of age or older, with priority to those in greatest social and economic need. Provides help with matters such as powers of attorney; living wills; and consumer, housing and medical issues.
Department of Motor Vehicle
When applying for a Delaware license and upon renewal of license, the applicant will be required to report or show certification concerning any medical conditions that may interfere with his/her ability to drive. Medical Evaluation Form PDF document
Handicapped Plates or Placards - Disabled placards are only valid for three (3) years.  Customers wishing to obtain a new placard or renewing their placard must present a Division of Motor Vehicles Application for Special Disabled License Plate or Special Disabled Parking ID Card that has been signed by their physicians.  The Division cannot issue a placard or renew a placard without this application form. New Handicapped Form-PDF document.
Medical Transportation  WHEELS (302) 395-5660- Persons 60 years old and older who have no other means of transportation to get to physicians, clinics, or other health care facilities in New Castle County but outside the city limits of Wilmington.  Call one week in advance of medical appointment.
VA Benefits Information: 1-800-827-1000
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.