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 Illinois yellow pages
Illinois State Flag  
Illinois HDSA Chapter
Chapter Contact Information:
P.O. Box 8383 
Rolling Meadows, Il. 60008
Illinois HDSA Chapter
HDSA Regional Representative:
Toll Free:
Leigh Peterson
459 63rd. Ave NE,
Fridley, MN 55432
Chapter's Nursing Home In-Service Trainer
Clarence Wiese
Special Notices
for current events that may be taking place in this area.
Support Groups
The Illinois HDSA Chapter would like to establish support groups throughout  the Metropolitan area. If you are interested in hosting a support group in your area, please call the chapter office, 630-443-9876 .
Young Adults/NYA
Call Chapter for details
Sue Leck
All young adults living with HD ages 9 through 29.
Cook County
Call Chapter for dates
12 p.m.
Cook County Hospital
All family and professionals with an interest in HD.
Lake Zurich & Lansing
Call chapter for times and dates
3rd Thursday of the month
Call Chapter for time.
Northlake Lutheran Church 
112 N. Wolf Road
All family and professionals with an interest in HD.
Call Chapter for dates
2 PM to 4 PM
St. Francis Hospital

530 NE Glen Oak
7th Floor Boardroom
Peoria, Ill
All family and professionals with an interest in HD.
Varies-Call for Information
2-4 PM 
Blessing Hospital Conf Rm G 
1400 Broadway 
Quincy IL
All family and professionals with an interest in HD.
Call Chapter for dates
2:00 P.M. to 4 P.M
St. Anthony's Hosp
1st Floor Auditorium 
5666 E. State
All family and professionals with an interest in HD.
HDSA Center of Excellence 
Genetics & Other Physicians
HDSA Center of Excellence at
Rush Movement Disorder Clinic
Rush Professional Office Building,
1725 W. Harrison St., Suite 755
Chicago, Il. 60612-3824
Appointments: 312- 563-2030.
Patients may be seen at our main offices on the Rush campus or at our satellite offices in Skokie and Oak Park.
M-F  8 a.m.- 4:30 p.m.
CoE Director
Kathleen M. Shannon, M.D.
Dept. of Neurological Sciences
Dr. Shannon is a neurologist who specializes in Huntington's Disease.
Cook County Hospital
Fantus Clinic, Dept. of Psychiatry
621 S. Winchester
Chicago, Il 60612-9985
M-F  8 am - 4PM
Dr. Steve Clingerman, Ph.D.
Neuropsychology's Coordinator
Dr. Clingerman is also the Chairperson of Family Services for the Illinois HDSA Chapter Board
Genetic Testing
These center use the HDSA official protocol for genetic testing of HD.

Carle Clinic
Medical Genetics/AMS 5
605 West University Avenue
Urbana, Ill 61801
Judy Miller, MS, CGC

Rush Presbyterian
St. Luke's Medical Center
1653 West Congress Parkway
Chicago, IL 60612
Dr. Kathleen Shannon

Advocate Medical Group
Lutheran General Perinatal Center
Parkside Center
1875 Dempster Street, Suite 340
Park Ridge, IL 60068
Seth Marcus, Deborah Rita, or Carol Booth
Long Term Care
HD Experienced
Need your input
Illinois Department On Aging
421 East Capitol Avenue Suite 100
Springfield, IL 62701-1789
Phone:   (217)  785-3143
Located in Quincy, Anna, LaSalle, and Manteno.
Assisted Living
Day Care
Adult Day Service Providers list for Illinois
Senior Companion Services- may possibly be provided in conjunction with Adult Day Services.
Long Term Care
Illinois Prevention of Spousal Impoverishment
Have An Emergency?
Dial 2-1-1 or visit  Illinois 2-1-1
State Resources
Illinois State Homepage
Advocacy/State Contact Information:
Lt. Governor
Illinois Federal
Agencies, Boards, & Commissions
County Government
State Telephone Directory
Domestic Violence Hotline 1-800-843-6154
Choices for Care  - All persons age 60 and older who are seeking admission to a long term care facility must be informed of all care options prior to admission.
Community Care Program
helps senior citizens age 60 years old or older who might otherwise need nursing home care, to remain in their own homes by providing in-home and community-based services.
Assistive Technology
Illinois Assistive Technology Project (IATP)
1 West Old State Capitol Plaza, Suite 100
Springfield, IL 62701
Phone/TTY:  1-800-852-5110
Fax:               217-522-8067
Web address:
List of Devices for Loan
Special Education Assistive Technology (SEAT)
Center at Illinois State University
Campus Box 5910, Fairchild Hall 324
Normal, IL 61790-5910
Phone:    309-438-7811
Fax:         309-438-2211
Web address:
Great Lakes Disability and Business Technical Assistance Center is a part of the University of Illinois at Chicago. The center is one of 10 regional centers funded by the National Institute on Disability and Rehabilitation Research (NIDRR), a division of the U.S. Department of Education. Its purpose is to provide technical assistance and training to businesses and persons regarding the Americans with Disabilities Act (ADA) of 1990.
Illinois Family Caregiver Support Program
defines a family caregiver as an adult family member or another individual who is an informal provider of in-home and community care to an older individual Grandparents and relative caregivers of children not more than eighteen years of age  and those individuals who are affected by mental retardation or who have developmental disabilities.
Residential repair and renovation services include adaptations to homes that can make it easier and safer to carry out activities such as bathing, cooking etc.  to improve its overall safety and condition. Available in some Illinois communities.
Client Assistance Program -helps people with disabilities receive quality services by advocating for their interests and helping them identify resources, understand procedures, resolve problems, and protect their rights in the rehabilitation process, employment, and home services.
Disability Determination Services - determines the eligibility of people to receive benefits from Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI). We provide services to 56 offices located in communities throughout the state. To find the nearest Social Security office, dial 1-800/772-1213 and tell the service representative your city, state and zip code. 
Equip for Equality - a private not-for profit legal and advocacy organization designated to operate the federally mandated protection and advocacy system to safeguard the rights of people with physical and mental disabilities including developmental disabilities and mental illnesses.
Independent Living - supports Centers for Independent Living (CILs) statewide that provide accessible programs and services to all people with disabilities. 
Estate Planning
Illinois Guardianship and Advocacy Commission an executive state agency created to safeguard the rights of persons with disabilities by providing legal representation, investigating complaints of rights violations and providing state guardianship for Illinois' population with disabilities.
Advance Directives
Declaration For Mental Health Treatment
An adult of sound mind may put into writing his or her preferences regarding future mental health treatment. The preferences may include consent or refusal of mental health treatment and may be stated on the forms provided. Declaration for Mental Health Treatment Form (PDF Format) (Spanish)
Estate Planning continued

Powers of Attorney for Property
This form can be used to designate agents to act on an individual's behalf if the individual becomes unable to do so.

Powers of Attorney for Health Care
This form can be used to designate agents to act on an individual's behalf in regard to health care matters if the individual becomes unable to do so. Power of Attorney for Health Care, Illinois Statutory Short Form (PDF Format) (Spanish

Statement of Illinois Law on Advance Directives

A guardian is a person, institution or agency appointed by the Probate Court to manage the affairs of another, called the ward. Illinois Guardianship FAQS

A Practitioner's Guide To Adult Guardianship In Illinois PDF document 30 pagesForms for a "Guardian of a Person"

Placement Petition
A petition and draft order are provided to facilitate placement of a ward in a residential facility.

Short-term Guardian Form
A short-term guardian appointed by the guardian shall have authority to act as guardian of the disabled person for a cumulative total of 60 days during any 12 month period.

Standby Guardian Form
A standby guardian is someone who has been appointed by the court as the person who will act as guardian of the disabled person when the disabled person's guardian dies or is no longer willing or able to make and carry out day-to-day care decisions concerning the disabled person.

Successor Guardianship
A petition and order are provided to assist in naming a successor guardian upon the death, resignation or removal of a guardian.

Probate Forms

Cook County
DuPage County
Lake County
Sangamon County

Circuit Breaker - A  rebate of a percentage of property taxes paid by persons with disabilities.
Low Income Home Energy Assistance Program (LIHEAP) is available to give assistance in paying gas and electric bills. Income levels must be met and also sign up dates. For more information call Ceda at 212-795-8800
Consumers--need help with your energy bills? 
Mediation to Medicare Beneficiaries to resolve a quality of care complaint under Medicare. This is at no direct cost to you. It is a dialogue between you and your doctor or hospital, facilitated by an impartial third person (the mediator).
Medicaid Manual-Illinois Mental Health (pdf)
Medicare/Medicaid Fraud
Central Intake:  1-866-274-8023
Outside Illinois: 1-708-338-7500
LAS attorneys provide needed assistance to eligible
children and adults with disabilities in a variety of
settings: mental health facilities, residential programs,
community placements, and nursing homes. Issues
addressed include, but are not limited to: admission
and discharge from hospitalization, adequate treatment,
refusal of unwanted services, and confidentiality
of mental health records.
Mental Health
Mental Health Decisions Outline  - A reference resource of past court decisions relating to mental health law in Illinois.
View a quick summary of this program
Circuit Breaker / Pharmaceutical Assistance provides prescription drug coverage for specific diseases. You may qualify for this program if you are an Illinois resident who has a disability. View a quick summary of this program
View a quick summary of this program
Veterans   1-800-243-5377
Veterans Benefit Assistance
Vital Statistics
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.
Illinois Consumer's Guide To Getting & 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.
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.