Huntington's Disease Support Information


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Miscellaneous State Resources
Other Resources

Click on map for yellow pages
Michigan State Flag  Michigan HDSA Chapter
President:         Robert W. Lentner
Phone:              (517) 646-0920
Fax:                  (517) 646-0885
Address:            4000 N. Michigan Road
                        Dimondale, MI  48821-9774
Help Line           (800) 909-0073
Website:            Michigan Chapter
                        Exercise Groups
Newsletter:        Bridges of Hope (on website)
Brenda Francis
Phone: 1-800-909-0073

Patient/Family Services Chair
Ruth Lentner
Phone: (989) 835-9933 

Self supporting through volunteers
and grants, patient/family services and education.
HD Experienced
Ann Arbor
University of Michigan Health Center
Department of Neurology - Movement Disorders
1500 East Medical Center Drive
Ann Arbor, MI 48109-0940
Appointments are by: Physician Referral Only
To make an appointment call: (734)764-6831
TTY: (800)649-3777
Co-Director, Movement Disorders Clinic
Clinical Assistant Professor
University of Michigan
1500 Medical Center Dr.
Taubman Center, 1914/0316
Ann Arbor, MI  48109/0316
Appointments:   734-936-9020
Information:       734-936-9010
Fax                      734-763-6545
Clinic visit includes comprehensive clinical evaluation, review of any outside studies, and suggestion of further diagnostic and management plans
Appointments: 734-764-8631
Fax:   734-647-8535
Early-onset, rapidly progressive, and familial dementias are particularly appropriate for this clinic.
Wayne State University
School of Medicine Dept. of Neurology
University Health Center 8A
4201 St. Antoine
Wayne State University
Detroit, Michigan 48201
Phone:      (313) 577-1249
Fax:          (313) 745-4216
Website:    Movement Disorders
Wayne State University 
The John D. Dingell VA Medical Center
4646 John R
Detroit, MI 48201
Phone:   313-576-1000
Website:   movement disorders
Speciality: evaluation, diagnosis and management of hereditary movement disorders including Huntington's
Farmington Hills
Michigan Institute for Neurological Disorders
28595 Orchard Lake Road - Suite 200
Farmington Hills, MI 48334-2977
Tel:  248-553-0010
Fax: 248-553-0818
Click here for:
Specialities: As neurologists, our physicians are highly trained to treat disorders of the nervous system including  diseases of the brain, including  child neurology and psychiatrt. We offer a multitude of diagnostic procedures in our offices. We have our own CT scan, MRI, and x-ray machines on site for your convenience.
Sinai Hospital
Clinical Neuroscience Center
26400 West Twelve Mile Road, Suite 110
Southfield, MI 48034
Dr. Trosch
Phone:  (248) 355-3875
FAX:      (248) 355-3857
Note:  Dr. Trosch is with the Parkinson's Disease and Movement Disorders Center and has been recommended by Janet Howse. The center is attached to Beaumont Hospital, which is the leading movement disorders hospital in the state.  Dr. Trosch  he sees about 1 patient with HD a week, from all over the state.
Janet Howes, MSW, LICSW
Private Practice Clinical Social Worker
Address:  NEED
City:        NEED
Phone:    NEED
Hours of Operation: NEED
(formerly of the Michigan HDSA Chapter)
Genetic Testing Facilities
University of Michigan
Molecular Medicine and Genetics Clinic
Box 0638
Ann Arbor, MI 48109-0638
Contact:    Wendy Uhlmann, MS
Phone:      (734) 763-2532
Fax:          (734) 763-7672
Website:    Genetics Department
Butterworth Genetics Services
21 Michigan NE Suite 465
Grand Rapids, MI 49503
Contact:     Kathleen Delp, MSW
Phone:       (616) 391-8664
Fax:           (616) 391-3114
Website:     Click here

Wayne State University
School of Medicine
Department of Neurology
University Health Center 8A
4201 St. Antoine
Detroit, MI 48201
Appointments(313) 745-4275
Genetic Counselor
    Karen Krajewski , MS
    (313) 577-1689
Website:   Neurogenetics
Services:  Testing and couseling is available for those who are at risk for, but do not yet manifest symptoms of a disease. Prenatal testing for some disorders may be possible once it is established through molecular testing that a couple is at risk for passing a genetic condition to a child.
ACLF/Nursing Homes
Need your input on HD experienced facilities
State Long-Term Care Ombudman
MichiganState Long-Term Care
Citizens for Better Care
6105 West Saint Joseph
Highway, Suite 211
Lansing, MI 48917-3981
Phone:  517-886-6797
Fax:      517-886-6349
toll free: 1-800-292-7852
MI has made it possible to search for nursing homes in Michigan by county, city or zip. You can also compare nursing homes in Michigan using a tool provided by the Health Care Financing Administration called Nursing Home Compare.
Assisted living facilities are not licensed by the state. If you are looking for a licensed facility for assisted living you may wish to consider a licensed adult foster care facility. The Michigan Department of Consumer and Industry Services is home to the Division of Adult Foster Care (AFC) Licensing which provides a web based statewide search tool for Adult Foster Care Facilities. You can either enter regional search criteria to locate facilities or use a state map.
 We do not recommend any facility or residential arrangement for a specific individual. However, we have prepared a checklist for seniors, their caregivers and family members to use in evaluating an assisted living option.
State Resources
Michigan Homepage
Access To Services -Programs, many listed below.  This is the entire list.
Adult Protective Services-The goal of the APS Program is to assist those persons 18 years or older who have been abused, neglected, or exploited and who are vulnerable and unable to take the necessary steps to correct their situation.
Children's Protective Services -In Michigan, the Family Independence Agency is responsible for investigating reports of suspected child abuse and neglect
Home Safety Checklist for Seniors -This checklist can be used to improve the safety of homes where seniors continue to live on their own
Assistive Technologies

Click here to begin using the resource directory.

Juvenile Justice -The Bureau of Juvenile Justice encompasses a range of prevention, rehabilitation and correctional services to juvenile offenders ages 12 through 20.
Trust Fund For Children With Special Needs -Helps pay for services and projects for children with special health care needs not provided by other health care funds. When a child needs special services or equipment and has no other source of payment, the Trust Fund may help. Some examples are wheelchair ramps, surgical repair of congenital anomalies, therapeutic tricycles and partial support for van lifts. 
Estate Planning
Burial Expenses - SER assists with burial when the descendants estate, mandatory copayments, etc. are not sufficient to pay
CarePlanner- is a decision support tool for successful living and care choices. It is for seniors, physically disabled and individuals who have a chronic illness and need supportive services, and mature adults who like to plan ahead.
Conservatorship-Information on Conservators and Guardians
Durable Power of Attorney-How to designate someone to make financial decisions and/or health care decisions
End of Life-The Michigan Physician Guide to End-of-Life Care
Finding a financial planner-Financial Planners offer advice on taxes, estate planning, insurance, educational funding for your children, real estate and investments, including securities
Living Wills-Planning future health care choices.
Michigan's Dignified Death Act-This is for patients who have a terminal illness. Some patients don't want aggressive treatment.
Michigan's Do-Not-Resuscitate Procedure Act
Some people don't want any special efforts made to prolong their life
Michigan Circle of Life Resource List-Other organizations and web resources with information or resources related to end of life.
Representative Payee-A representative payee has the authority to cash an SSA/SSI check and use it for the adult's benefit
Wills and Estate Planning-Tips on Estate Planning
Click on Map for FIA County Office Information
Financial Support
Cash Assistance For Disabled Adults - SDA - a program for individuals who are disabled or the caretaker of a disabled person. SDA groups will consist of either single individuals or spouses living together. A person is disabled for SDA purposes if he/she: (see website)
Family Independence Program - provides cash assistance to eligible families with children. A family with income may be eligible if the income is less than the family's needs by FIP standards. For the location in your county, click here: FIA Locations
FAP Eligibility Requirements - for food assistance depends on the financial situation of all persons who live together and purchase and prepare food together.
Financial/Income Search Michigan services

Food Banks-The Food Bank Council of Michigan is a statewide charitable organization gathering food and funds to help stock the shelves of its member food banks.

Home Ownership Services- may help prevent loss of a home.
Home Repairs-SER assists with home repairs to correct unsafe conditions and restore essential services. Eligible home repairs may include repair or replacement of a non-functioning furnace, hot water heaters or septic systems. The repair(s) must restore the home to a safe, livable condition. SER does not pay for improvements or nonessential repairs.
is a pre-screening tool that allows you to find programs offered by the State of Michigan that may help families in need with assistance for medical, nutritional, food, day care, temporary cash or other expenses.  Click here for more information.
Home Services
If after reviewing these you still cannot find the help or information you are looking for, please feel free to contact us through our feedback form.
MI Choice Waiver Program-Through this program, eligible adults who meet income and asset criteria can receive Medicaid-covered services like those provided by nursing homes, but can stay in their own home or another residential setting.
 Volunteer Needed To Be Michigan's
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Special Notices
Support Group Meetings
These group meets to share their experiences, strengths and hopes in order to solve common problems and to let you know that you are not
alone in coping with Huntingtons Disease. If you want to learn more about HD or have questions or want to share your views, you will be welcome. See Michigan Chapter website for driving directions.  Support Groups
When:      2nd Thursday of the month
Time:        7:00PM
Where:     St. Joseph Hospital
                 5301 E. Huron River Dr.
                 Education Building  Parking Lot P
                 Ypsilanti, MI
Contact:   Doug Cameron
Phone:     734-677-0258
Click HERE for a map
When:      2nd Tuesday of the month
Time:        3:00PM
Where:     Tendercare of Clare
                 600 S.E 4th Street
                 Clare, MI
Contact:    Ruth
Phone:      989-835-9933
Click HERE for a map
Detroit Area
For information
Contact:   Gery Wieske
Phone:      810-463-1889
Genessee County Area
Where:     Genesys Regional Medical Center
                  West Flint Campus
                  Conference Center Bld
                  Board Room 2nd Floor
                  3921 Beecher Rd 
                  Flint, MI
Contact:    Jean
Phone:       810-659-4548 or Shelia 810-793-7132
Click HERE for a map
Grand Rapids & Western Michigan
Where:     Metropolitan Hospital
                 1919 Boston, SE

                 Grand Rapids, MI
Contact:   Larry
Phone:      616-791-6468
Click HERE for a map
Where:     Borgess Hospital
                 Lawrence Education Center Rm 123
                 1521 Gull Rd
                 Kalamazoo, MI
Contact:   Sara
Phone:      616- 381-7725 or Marion 616-763-9901
Click HERE for a map
Lansing Area
Where:    Sparrow Dimondale Center
                4000 N. Michigan Road
                2nd Floor of Homeward Bound Bldg.
                Dimondale, Mi.  
Contact:  Ruth
Phone:    800-909-0073
Click HERE for a map
Macomb County Caregiver Group
When:      2nd Tuesday of the month
Time:        7:00PM
Where:     33894 Lakewood
                 Sterling Heights, MI
Contact:   Christine
Phone:     810-268-7014
Click HERE for a map
When:      4th Friday of the month
Time:        7:OOPM
Where:     Marlette Hospital Community Building 
Address:   3270 Wilson
                  Marlette, MI.
Contact:   Ruth Lentner
Phone:      989-835-9933 or Jeannette 989- 635-7142
Click HERE for a map
When:       1st  Saturday of the month
Time:        1:00PM
Where:      Community Covenant Church
                  1123 13th Street
                  Menominee, MI 49858
Contact:    Chris :
Phone:      906-863-6051 or  Greg   715-789-2526
Click HERE for a map
When:       2nd Tuesday of the month
Time:         7:00PM
Contact:    Ann 
Phone:      989-561-5023
Click HERE for a map
Royal Oak
When:       4th Tuesday of the month
Time:         7:00PM
Where:      Wm Beaumont Hospital
                   Admin.  Building Conf  Room A/B/C
                   3601 West 13 Mile Rd
                   Royal Oak, MI
Contact:     Ruth
Phone:       989-835-9933
Click HERE for a map
Taylor & Downriver
When:      1st  Friday of the month
Time:        7:00PM
Where:     Heritage Hospital 
                 10000 Telegraph Rd
                 Taylor, MI
Contact:   Betty
Phone:     734-947-1058
Click HERE for a map
Traverse City Area
When:     4th Thursday of the month
Time:       7:00PM
Where:    NW Michigan Blood Program
                Conference  Room
                2575 Aero Park Drive
                Traverse City, MI.
Contact:  Ruth
Phone:     989-835-9933
Click HERE for a map
Tri-City Area:
Midland, Saginaw and Bay City
When:       1st Thursday of the month
Time:         7:00PM
Where:      Sagniaw Township Hall
                  4980 Shattuck Road
                  Saginaw, MI
Contact:    Ruth
Phone:       989-835-9933
Click HERE for a map
State Resources-Home Services continued
Chore Services- are non-continuous household maintenance tasks intended to increase the safety of the individual(s) living at the residence.
Durable Medical Equipment - includes devices, controls, or appliances specified in the plan of care which enable the beneficiary to increase their ability to perform activites of daily living, or to perceive, control or communicate with the environment in which he/she lives.  This also includes items necessary for life support, ancillary supplies and equipment necessary to the proper functioning of such items.
Friendly Reassurance - Make regular contact, through either telephone or in-home visits, with homebound older persons to assure their well being and safety and to provide companionship and social interaction.
Friendly Visitor - A volunteer who makes regular visits to homebound or isolated older persons to provide companionship and social interaction.
Home Delivered Meals-provides at least one nutritionally sound meal per day to adults who are homebound and who do not have friends or family to assist with meal preparation
Home Injury Control-Services such as personal emergency response systems (PERS) which aid in detection and notification of home emergencies for frail and disabled persons.
Home Health Aide- Perform health-oriented services prescribed for an individual by a physician. These services may include: assistance with activities of daily living (ADL), assisting with a prescribed exercise regiment, supervising the individual's adherence to prescribed medication and/or special diets, changing the non-sterile dressing, taking blood pressure, and other health monitoring activities.
Homemaker-Performance of routine household tasks to maintain an adequate living environment for adults with functional limitations. Homemaking does not include the provision of chore or personal care tasks.
Home Repair-covers the permanent improvement to an older persons home to prevent or remedy a sub-standard condition or safety hazard.
In Home Respite-provides companionship, supervision and/or assistance with activities of daily living (ADL) for mentally or physically disabled and frail elderly persons in the absence of the primary care giver(s). To be eligible for this service, clients must require continual supervision in order to live in their own homes or the home of a primary care giver. ADL includes personal hygiene and grooming, meal preparation and kitchen safety, homemaking and leisure pursuits.
Individual Assessment and Monitoring-includes an initial assessment and periodic reassessments of clients of personal care and home delivered meals programs. All assessments are conducted by a registered nurse. Assessments are used to determine eligibility for personal care and home delivered meals.
Nutrition Counseling-provides individualized advice and guidance to persons who are at nutritional risk (because of health and/or medication use or chronic illness) about options and methods for improving their nutritional status. An assessment of need is first performed. The counseling service must be performed by a registered dietician. The counselor will develop a nutritional plan of care. Nutrition counseling can be provided ion a variety of settings, including a person's residence.
Personal Care-is the provision of in-home assistance with activities of daily living (ADL) for an individual including assistance with bathing, dressing, grooming, toileting, transferring, eating, and ambulating.
Specialized Respite-provides a brief period of rest or relief from the day-to-day care giving when the community client is either a dependent family member or primary caregiver. Either the dependent family member or the primary caregiver must be sixty (60 years of age or older. Specialized respite services provide short-term, temporary care and supervision to persons in their own homes or in out-of-home settings.
Telephone Reassurance -Volunteer reassurance callers make regular contact with homebound older persons to assure their well being and safety and to provide social interaction.
Medicaid primer course -health care coverage for low-income people and working families who qualify. This includes families, children, women who are pregnant, and persons under the age of 21. It also offers help to people who are blind, disabled or age 65 and over
Legal Hotline for Michigan Seniors toll free at 1-800-347-5297. There is no charge for this service.
Rights and Responsibilities
Who to contact to find out your rights.
Long Term Care
Adult Community Placement-Provides assistance to individuals and families in locating and selecting licensed community care facilities for people who can no longer live independently. Licensed care settings include Adult Foster Care (AFC) facilities, Homes for the Aged (HA) and nursing care facilities
adult day care -Program participants must require regular supervision in order to live in their own home or the home of a relative. They must require a substitute caregiver while their regular caregiver is at work, in need of respite, or otherwise unavailable. In addition, they must have difficulty or be unable to perform without assistance activities of daily living (ADL). They must be capable of leaving their residence, with assistance in order to receive the service.
Counseling-Professional-level counseling services, including emotional support, problem identification and resolution, and skill building, provided to older adults who are experiencing personal, social or emotional problems which may be relation to psychological and/or physiological dysfunction.
Independent Living Services-Offers a range of Medicaid and non-Medicaid services to individuals of any age who require consultation or assistance to maintain and maximize functional capacity within their own homes or other independent living arrangements.  A range of services are available without regard to income or assets upon request to individuals who need assistance. Contact your FIA Locations
Independent Living/Senior Services-The Commission for the Blind provides assistance with Independent Living (I.L.) for Older Blind Individuals. I.L. specialists provide evaluation, training and referral services to assist older blind individuals, 55 and older, in regaining or maintaining their independence.
Michigan's Long Term Care Self Assessment-Use Michigan's long term care self assessment to help determine service needs.
Shopper's Guide to Long-Term Care Insurance-The National Association of Insurance Commissioners (NAIC) has written this guide to help you understand long-term care and the insurance options that can help you pay for long-term care services.
Heat and Utilities-Financial assistance may be provided to low-income households who meet eligibility requirements when heating or electric service has been or will be shut off.
Home Energy Assistance (LIHEAP)-Federal funds are available from the Low Income Home Energy Assistance Program (LIHEAP) to assist low income families with energy costs.
Misc. State Support
Guardianship Programs
A listing of guardianship programs in each state
Patient Advocate Foundation  listings by State: 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.
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
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.
provides helpful forms to families living with Huntington's Disease to help organize their daily caregiving needs. DOZENS of forms you can use everyday, most of them are in Word format for easy printing and sharing!
HD Guidebooks, research, youth, chat rooms & more!
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.
Michigan Consumer Guide for Getting and Keeping Health Insurance - A guide. 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.