Huntington's Disease Support Information

New Jersey

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Miscellaneous State Resources
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  Click on map for NJ yellow pages
 New Jersey
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New Jersey HDSA Chapter
Toll Free
Info Email
Susan Dromsky-Reed, Esq.
114B South Main Street
Box 67A
Cranbury, NJ 08512
Family Services
Web Info:
Donna Ross, LCSW, MSW
1-800-424-2494 (UMDNJ)
Family Service Center 
Chapter Quick Connects:
Support Groups
Central Jersey
3rd Wed. of each month
6:30 p.m. to 8:00 p.m.
667 Hoes Lane
Piscatawy, NY
Mitchell Douglas, LCSW
732-35-5993 or
Sandy Egen, RN
North Jersey
1st Monday of each month
7:00 p.m. to 8:30 p.m.
Overlook Hospital 
99 Beauvior Avenue
Summit, NJ
Mitchell Douglas, LCSW
Caregivers, At-Risk, and Affected Individuals
HD Clinic-Newark
1st & 3rd Thurs each mo.
UMDNJ-NJ Medical School
Department of Psychiatry Doctors' Office Center
Newark, NJ
Donna Ross, LCSW, MSW 732-235-5730
South Jersey
3rd  Wed of each month
7:30 p.m. to 9:00 p.m. 
Medical Center Drive
Academic Center
Stratford, NJ
Sue Betts, LCSW
Caregivers, At-Risk, and Affected Individuals (No meetings July/August)
HD Clinic
2nd & 4th  Mondays
UMDNJ-School of Osteopathic Medicine 
Center for Aging
Stratford , NJ
Sue Betts, LCSW
This group meets the 2nd Wednesday of each month.  Please contact Judy Cerciello, MSW at
732-370-8600 for information on monthly support group meetings continuing at Leisure Chateau Care Center in Lakewood,  NJ
The Samuel L. Baily
Huntington's Disease Family Service Center
University of Medicine & Dentistry of NJ-SOM
Division of Human Genetics
Specialty Care Center, Suite 3800
Stratford, NJ 08084
Phone:     856-566-7078
Hotline: 1-800-424-2494
Services: Provides support services, counseling, referrals, medical services, genetic services, support groups, placement and protection services. and professional in-service education.
Genetic Testing Contact Susan Betts, MSW
Comprehensive Care Clinic
The University of Medicine and Dentistry of NJ,
Robert Wood Johnson
Medical School COPSA
University Behavior HealthCare
Piscataway, NJ:
Phone: 732-235-5730
Movement Disorders Center
RWJUMG Dept. of Neurology
Clinical Academic Building
125 Paterson Street
New Brunswick, NJ 08901
Phone:       732-235-7733
Tollfree:   1-877-864-3627
Services:  provide consultation, diagnostics and long-term care of patients with movement disorders.
Physician's continued
Dr.  Podskalney
School of Osteopathic Medicine
Center of Aging Speicalty Care Center..
42 E Laurel Rd ste 3200
Stratford, NJ  08084-1504
Contact:  Sue Betts, Social Worker
Phone:  856-566-6843
Genetic Testing
Huntington's Disease Family Service Center
Copsa Institute
667 Hoes Lane
Piscataway, NJ 08855-1392
Contact:     Dr. Michael K. McCormack
or               Donna Ross, LMSW
Phone:      732-235-5730
or 732-235-5992
Fax:            732-235-4920
If you would like to contact Dr. McCormack
directly, please call him at 732-235-5992
in Piscataway or 856-566-6469 in Stratford
in southern New Jersey. 
University of Medicine & Dentistry of NJ
New Jersey Medical School
Doctors Office Center, Suite 5200
90 Bergen Street
Newark, NJ 07103
Contact:     Donna Ross, LMSW
Phone:      732-235-5992
Fax:            732-235-4920
ACLF's/Nursing Homes
Ombudsman for the Institutionalized Elderly
P.O. Box 807
Trenton, NJ 08625-0807
Phone:  609-588-3614
FAX:     609-588-3365
Nursing Homes HD Experienced
JFK Hartwyck Nursing
Convalescent &
Rehabilitation Center
1340 Park Avenue
Plainfield, New Jersey 07060
Phone: 908-754-3100
There are approximately 350 skilled nursing facilities in NJ which provide physician-ordered medical services and supervised nursing care on a 24-hour basis for persons who do not require acute care hospitalization, and whose needs can be met only through inpatient care in a long-term care facility. Or you can search by County:
Alternative Living continued
ALFs [Assisted Living Facilities] provide a coordinated array of personal and health services, medication management and 24-hour supervision, if needed, in a home-like setting. Assisted living facilities in New Jersey are licensed by the Department of Health and Senior Services, and are available as an ECO Waiver option or on a private-pay basis.
AFC  [Adult Family Care] is a package of services including room, board and some health care for no more than three persons living in a home of an unrelated individual who has been trained and approved by a sponsor agency.
ALPs [Assisted Living Program] offers a package of assisted living services in some publicaly-subsidized housing units, including personal care, medication management, and 24 hours supervision, when needed. The program is administered through an agency licensed by the NJ Department of Health and Senior Services, and is available as an ECO Waiver option or on a private-pay basis.
CPCHs [Comprehensive Personal Care Homes] offer room and board, and assisted living services including assistance with activities of daily living, 24-hour supervision when needed, and medication management. These facilities, converted from other entities such as boarding homes, typically offer rooms to share.
Have An Emergency?
Dial 2-1-1 or visit  2-1-1 New Jersey
State Resources
New Jersey Homepage
State Specific
This site provides the names, addresses, licensure expiration dates, and other information for hospitals, ambulatory care and other acute care facilities licensed by the Department of Health and Senior Services.
Statewide Domestic Violence Hotline
Adult Protective Services (APS)
NJ County APS office or 1-800-792-8820
If you or someone you know is 18+ of age or older, living in the community and is subject to abuse, neglect and/or exploitation, a County APS program may be the place to turn!
Hotline:  1-877-652-2873
 Toll Free Numbers of State Agencies:
Area Agencies on Aging - Services funded and available may include information and assistance, outreach, transportation, case management, homemaker, visiting nurse, respite, telephone reassurance, hospice, escorted transportation, adult day care, legal assistance, education, caregiver support, etc. Meals provided in a group setting and delivered to the home are also available.
Assistive Technology
Assistive Technology Advocacy Center of New Jersey Protection and Advocacy seeks to overcome barriers in the system and make assistive technology more accessible to individuals with disabilities throughout the state of New Jersey. The program offers information & referral, support for access to use Assistive Technology devices, and interagency coordination.
Area Agency of Aging Resources:
AL/AFC's [Assisted Living/Adult Family Care]
provide a coordinated array of personal and health services, medication management and 24-hour supervision, if needed, in a home-like setting, or in a private home approved by the Department. ALF's and the sponsor agency for AFC's, are licensed by the Department of Health and Senior Services, and are available as an ECO Waiver option or on a private-pay basis.
Adult Day Health Services is a program that provides medically necessary services in an ambulatory care setting to persons who are nonresidents of the facility, and who, due to their physical and/or cognitive impairment, require such services supportive to their community living that cannot be provided elsewhere.
CAP [Caregiver Assistance Program] provides a package of in-home services for individuals living in private homes. It is designed to supplement the care provided by unpaid caregivers, and strengthen the foundation of that informal support. The program is available to Medicaid eligible persons who are assessed as needing long term care.
These programs and services are for adults who choose to remain at home and whose needs range from minimal assistance with self care to the need for a great deal of assistance.
Caring for You, Caring for Me:
Education and Support for Caregivers
609-943-3462 or 609-943-3458
Education and support to those who are caring for family members or friends in an effort to reduce caregiver stress and maximize capabilities.A trained facilitator will guide caregivers through the course using a workbook and group discussion.
Community Care Program for the Elderly and Disabled is a program of home-based services for nursing home eligible seniors provided on the basis of available "slots" within the individual counties.
Community Choice Program is a state-wide program created to assure that Medicaid-eligible senior citizens, persons with disabilities, and their families are aware of the choices they have regarding long term care. The program staff conducts a care needs assessment and then works with the client and his/her family to review appropriate community-based alternatives to nursing facility care.
In-Home Caregiver Education Support Program 609-943-3462 or 609-943-3458
reinforces the care given to frail family members at home. The program is free. It provides individual caregivers with education and support that allows them to develop goals to improve their ability and effectiveness as in-home caregivers. Services are available to an unpaid person who assists any care recipient, 18 or older, with activities of daily living.
Home delivered meals are hot and nutritious meals delivered to homebound persons at least five days a week, and up to seven days a week for some participants. A needs assessment is required. There is no strict income requirement.
Meals on Wheels of America If you are looking for a meals program in a community, Meals on Wheels of America provides a comprehensive list of home delivered meal programs and nutrition sites by state and city.
Respite care  State-Wide 609-943-3466
is provided in-home or at an alternative location for a short stay. This consists of short-term caregiving services -- from a few hours a week over a longer period to an intensive stay in a nursing facility -- when the primary caretaker needs time away from caregiving.
Child Care Hotline at: 1-800-332-9227
Kinship Care Program  1-877-816-3211
Kinship caregivers are special people who have taken on the responsibility of caring for their relatives children - these children might be the caregivers siblings, nieces, nephews, or, most often, grandchildren.
NJ FamilyCare  Insurance
If you are interested in NJ FamilyCare please look at the "Who is covered?" section to see if NJ FamilyCare could be for you. How to Qualify can be viewed in any of the 7 Languages below.
Spanish, PolishFrenchPortuguese, KoreanArabic, Chinese
PDF document 74 pages
Provides delivery of in-home support services by allowing elderly and disabled Medicaid-eligible recipients to direct and manage their own personal care services through a monthly cash allowance. Eligibility: Individuals who are 18 years of age or older who are Medicaid eligible and who qualify for Personal Care Assistant Services(PCA) and will need the PCA services for at least 6 months.
The Division of Developmental Disabilities coordinates and provides services for people with autism, mental retardation, cerebral palsy, spina bifida and traumatic brain injuries. Services include counseling, respite care for family members, and referral services to other community-based resources needed. This Division also operates seven developmental centers, where people with developmental disabilities receive round-the-clock care and it licenses privately operated group homes, supervised apartments, supported living programs and skill development and family care homes in communities throughout the State.
The Division of Disability Services provides information and referral services to people with disabilities and their families, who are seeking help locating appropriate resources in their communities. The Division also is responsible for overseeing various Medicaid home-and community-based waiver programs that are designed to help people with disabilities live as independently as possible.
Health Care for People with Disabilities is provided by the Division of Medical Assistance and
Provides personal assistants to adults with physical disabilities who live in the community. Personal assistants help with tasks such as light house-keeping, bathing, dressing, meal preparation, shopping, driving and using public transportation. Program participants may receive up to 40 hours of service each week depending on their needs.
PAAD - LIFELINE - HAAAD Special Benefit Programs for the Aged and Disabled.  The Pharmaceutical Assistance to the Aged & Disabled (PAAD) program, the Lifeline Programs, and the Hearing Aid Assistance to the Aged & Disabled (HAAAD) program are three state-funded programs with similar eligibility guidelines.  Open Monday through Friday 8 AM - 5 PM
LIFELINE 1-800-792-9745 - Lifeline is a utility assistance program that offers $225 to persons who meet the PAAD eligibility requirements or who receive Supplemental Security Income (SSI). This includes utility customers as well as tenants whose utility bills are included in their rent. Only one tenant in a household is entitled to this assistance. You are eligible for the Lifeline benefit if you are a recipient of Pharmaceutical Assistance to The Aged and Disabled (PAAD). If you are not a beneficiary of these programs, but you meet the eligibility requirements for PAAD, please contact our office for an application (Word) (PDF) . Recipients of Supplemental Security Income (SSI) should not file an application for Lifeline. The Lifeline benefit is automatically included in the SSI checks.If you pay utility bills directly to a single utility company, a $225 credit will appear on your utility bill. If you receive service from two different companies, the $225 credit will be divided equally between the two utilities. If the cost of your utilities is included in your rent, you will receive a check for $225. Your Lifeline application pertains only to your primary place of residence. Seasonal or temporary residence in New Jersey is not considered a primary residence.
Estate Planning
Advance Directives For Health Care - Planning Ahead For Important Health Care Decisions.  New Jersey Bioethics Commission. PDF document, 27 pages.
How To Become The Legal Guardian of A Person With Disabilities receiving services from the NJ Division of Development Disabilities.  A 28 page PDF document describing the guardianship over an incapacitated person over the age of 18.

Food Stamp Program 1-800-792-9773
You may be able to receive Food Stamps to help pay for food for you and your family. The food stamp program is separate from WFNJ
Click here for Food Stamps Applications, (Cupones de Alimentos)

Lifeline Utility Assistance - offers $225 to persons who meet the PAAD eligibility requirements or who receive Supplemental Security Income (SSI). This includes utility customers as well as tenants whose utility bills are included in their rent. Only one tenant in a household is entitled to this assistance.

Low-Income Home Energy Assistance Program (LIHEAP) -Hotline 1-800-510-3102 Food, clothing, shelter and household furnishings; temporary rental assistance or back rent or mortgage payments; utility payments (such as heat, water, electric); transportation. WFNJ clients may receive Emergency Assistance (EA) in certain situations.
Work First New Jersey is the states public assistance program, designed to help families move to self-sufficiency by offering them a full array of supports, from child care, health insurance and transportation, to substance abuse treatment and emergency funds. Recipients face a five-year lifetime limit on cash assistance, and must become employed or take part in work activities.
The New Jersey Care  program helps to enroll Medicaid-eligible aged, blind or disabled residents in Health Maintenance Organizations (HMOs) through which their medical care can be coordinated and managed. Referral and information also can be obtained by calling the Division of Disability Services at 1-888-285-3036.
Hospice programs provide management of terminal illness, and support and bereavement care for the family through the use of an interdisciplinary team of doctors, nurses, paraprofessionals, social workers, clergy, and volunteers. The services are provided in the home, or in participating hospitals or free-standing facilities. Hospice Facilities in New Jersey
Medicaid Hotline toll-free: 1-800-356-1561
Within New Jersey Medicaid are also a number of special programs designed to meet the specific medical needs of certain groups of people who would not otherwise qualify for the program.
New Jersey Hospital Care Payment Assistance Fact Sheet - The New Jersey Hospital Care Payment Assistance Program (Charity Care Assistance) is free or reduced charge care which is provided to patients who receive inpatient and outpatient services at acute care hospitals throughout the State of New Jersey. Hospital assistance and reduced charge care are available only for necessary hospital care. Some services such as physician fees, anesthesiology fees, radiology interpretation, and outpatient prescriptions are separate from hospital charges and may not be eligible for reduction.
Office of Managed Care
Supplemental Security Income is a benefit program for permanently disabled adults who  receive maintenance payments from that agency and supportive services (including emergency assistance and payment for burial) through the county welfare agencies. For eligible individuals, a state supplement is provided in order to increase the net countable income up to the state standard for the respective living arrangement.
Temporary Disability Insurance - Under the New Jersey Temporary Disability Benefits Law, cash benefits are payable when you cannot work because of sickness or injury NOT caused by your job. New Jersey is one of only five states which provides compulsory temporary disability insurance for workers.
Legal Services/SSI Initiative 1-877-576-5774
The Division of Family Development has established an agreement with Legal Services of New Jersey (LSNJ) to assist these recipients in either filing for SSI benefits or appealing a denial of benefits.
Mental Health
Mental Health Services  coordinates and provides community-based supports, like counseling, emergency screening, case management and residential and day program services and, if necessary, in-patient care for people with mental illness.
DMV Toll-Free 1-888-486-3339
[ 609-292-6500 outside NJ] Under New Jersey law, a disabled person may obtain either a special license plate or vehicle placard that provides special parking privileges. To obtain the request form that must be certified by a physician or podiatrist, call Motor Vehicle Commission.
Healthcare Services Transportation Program - This program assists the veteran in need  of transportation. The program originated due to the distance many N.J. veterans had to travel to get to a VA facility for medical care. Free transportation is offered to VA medical centers and clinics, other hospitals, private physicians, VA Regional Office and local veterans service offices in most counties. The state veterans service officer in the county should be contacted to explain the details of the program, level of service in that county, qualifications and requirements, and assist in scheduling the transportation. For more information call a Veteran Service Officer listed in Appendix A.
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.
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.
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.