Tools For Viewing
10 The Most Commonly Asked Questions
Clinical Trials & Research
Huntington's Disease~WeMove Info
Advocacy/Donations/Press Info
Clinical Definition & Search
Facing HD~Family Handbook
JHD Handbook-Chapter 1
JHD Info-Stanford Univ.
Physician's Guide To HD
Caring for People with HD
Physical & Occupational Therapy In HD
Understanding Behaviour in HD-Dr. Jane Paulsen
Understanding Behavioral-Dr. Edmond Chiu
Advanced Stages Caregivers Handbook
First Shift-Certified Nursing Assistants
Activities of Daily Living-HD
Unified HD Rating Scale (UHDRS) Motor Section
Westphal Variant
Age & Probability Chart
At Risk For HD-What Next?
At-Risk Checklist
Best Interest of Child?
Crystal Ball?
Food For Thought
Parent Hasn't Tested?
Q&A On Risk of Inheriting JHD
Testing Children
Genetic Disorders & Birth Defects
Genetic Testing for HD
Genetic Counseling-In General
Psychological Impact
Intro: Genetics/Genetic Testing
Prenatal & Preimplanation
Prenatal Testing-In General
o Genetic Testing Resources
o Personal Stories
Coping With The Early Years
Age of HD Appearance
Age of Onset-Historical
Family-HD Underestimated
Children of Parents With HD
Child~Parent Ill
Clinical Description JHD
HD - What Kids Are Saying
HD & Me
JHD-Duration of Illness
JHD-Clinical and Research
JHD Symptoms
Parenting With HD
Patients/Families Coping
Talking With Children About HD
5 Stages of HD
JHD Resources
Parent Resources
8 Fears of A Chronic Illness
Anxiety, Fears & Phobias
Apathy-Physician's Guide
Attention-Perceptual/Unawareness Physician's Guide
Bed/Pressure Sores
Bed/Pressure Ulcer Guideline
Behavior Management
Bi-Polar Disorders
Botulinum toxin therapy
Caring Tips
Child Abuse-Reconizing Signs
Chorea-Physician's Guide
Cognitive/Decision Making/Impulsivity
Cognitive-Short Tips
Contractures~Joints Locking
Dehydration-Physician's Guide
Denial of HD
Depression~Physician's Guide
Depression-Understanding It
Depression-How To Help
Depression - Treatment Resistant Patient
Depression-Other Resources
-Read If Your Child Is On Antidepressant
Disgust - Impaired Recognition in HD
Dissociative disorders
Driving - Physician's Guide
Dyslexia Resources
Dystonia/Rigidity & Spasticity Physician's Guide
Dystonia-Predominant Adult-Onset HD
Epileptic Seizures and Epilepsy
-Seizures ~Special Populations
Falling - Subdural Hematoma Risk
Fevers - Unexplained
Fevers, sweating & menstural cycles in HD
GERD (Stomach)
HD Principle Treatments
Hand muscle reflexes in HD
Hypothalamus - A Personal Theory
Insomia ~Physician's Guide
Irritability~Temper Outburst Physician's Guide
Learning Disability
Mania/OCD~Physician's Guide
Mood Disorder Rate In HD
Myoclonus (Movements)
Nails-What To Look For
Night Terrors
Obsessive Compulsive OCD
Panic Disorder
Personality disorders
Pneumonia-Advanced Stages
Pneumonia - Aspirated (Inhaled)
Prosody - Social Impairment
Sexuality~Physician's Guide
Skins Sensitivity
Sleep Disorders
Smoking-Physician's Guide
Why Certain Symptoms Occur
Symptom & Treatment Resources
Communication Resources
Communication Problems
Communication Strategies For HD~Jeff Searle
Hints For Weight Loss in HD
HD & Diet~HSA Fact Sheet 7
Nutrients: Some Possible Deficiency Symptoms
Nutrition and HD~Anna Gaba (Recipes)
Nutrition Information In HD~Naomi Lundeen
Speech & Swallowing~Lynn Rhodes
Swallowing & Nutrition Physician's Guide To HD
Swallowing & Nuitrition Resources
Swallowing Warning Signs
5 Swallowing Problems
Taste changes in HD
Weight Gain
-Feeding Tubes~Advanced Stages of HD
-Feeding Tube~Jean Miller
-Feeding Tubes: One More Word ~Jean Miller
-Feeding Tubes & Baby Foods
-Feeding Tube~Dental Care
-Feeding Tube Instructions~Jean Miller
-Feeding Tube Resources
Finding a Therapist - Behavoir
What Is A Physiotherapist?
Physical Therapy In HD
Speech-Language Therapy
Therapy Descriptions
Therapy Resources- Easter Seal
Therapy Resources
HD Treatments
Medications-Movement Disorders
Medication/Emergency Info Forms
Cutting Prescriptions
Drugs-Look 'Em Up
-Adolescents Under 25
-Antidepressant Adverse Effects
A-Z Mental Health Drugs
-EPA~Fish Oil
-Haldol/Haloperidol - Clinical Sheet
-Haldol~Clinician Description
-Haldol & HD
-Haldol/HD Patient Experiences
-Haldol~ Patient Handout
-Mood Stabilizers: ASK 3 Questions
-Neuroleptic Malignant Synd WARNING
-Olanzipine-Risperidone/blood tests
-Psychiatric Drugs & Children
Sertraline ~Zoloft
-Spasticity Meds/Treatments
-SSRI Medications
-Tardive Dyskinesia WARNING
-Weight Gain Medications
-Sites/Help the Medicine Go Down
-Vitamin & Mineral Deficiencies
Surgery-Movement Disorders
o Surgery Resources
Clinic Visits-How To Prepare
CT Scans, MRI's etc.
Swallowing Tests
Tests Commonly Used
o Procedures Resources
Alcohol-Parent's Guide
Alcohol-Talking To Your Child
Drugs-What To Do?
Drugs-Talking To Your Child
Disciplining-Ages 0-13 & Up
Straight Talk On Suicide
Teen Suicide-You Need To Know
o Suicide Resources
Divorce & Child Stress
Tips For Divorcing Parents
Guides To Disability Issues
Caring-Child & Medical Technology
Caring for a Seriously Ill Child
Child Long Term Illness
Disability-Special Education Plan
IFSP Early Intervention Process
Disability Resources
Financial Planning
Wishes Can Come True-Children's Wish Foundations
Special Needs Resources
Special Needs Camp - About
Special Needs Camp - Finding One
Child Assistive Technology
Adaptive Equipment Resources
Signs of Unhealthy Self-Esteem
Emotional Behavior Links
o Emotional Support Resources
Helping Child Deal With Death
o Grief Addtional Resources
ADD & Teens
Conduct Disorders
FAQS & Related Info
Understanding AD/HD
What Is AD/HD?
Research Articles
HD Support Groups
National Youth Association
HD Links
Related Resources
Tips For Friends
HD Disability
Benefits Check UP - See What You Can Get
Medical Insurance Bureau's Facts On You!
Medicare Rights-Home Health & Hospice
Medicare Rights Center Resources
No Insurance? Try This!
Prescription Drug Cards Part I
Prescription Drug Cards Part II
Social Security-Children With Disabilities
Caregiver Self-Assessment
Caregiver's Handbook
"First Shift With A Person With HD"
Getting Respite Care/Help At Home
Helpful Forms-Info
Home Emergency Preparations
Symptom Management
Ten Tips
Useful Tools
Our Personal Experience
Coping At The End
Kelly E. Miller
Song & Verse
Letter From My Heart
Financial Planning


Every parent knows that raising a child is one of life's most fulfilling challenges. But if your child has a chronic illness, condition, or disability, your role takes on an even greater purpose. You are more than a loving parent; you have become your child's primary health advocate.

Although the emotional price of raising a seriously ill child can be devastating, it's only part of the picture. Even during this difficult time, you have to consider the financial implications of your child's illness. Some parents become overwhelmed by medical expenses or blindsided by unexpected bills and additional fees. Even wealthy and highly responsible families have found themselves on the brink of a financial freefall.

Even so, maintaining your family's financial health is not impossible. With organization and careful planning, you can learn to manage your money during a medical crisis.

Costs of Health Care
The costs of long-term health care can be staggering, and families don't always heed them until they're hit with the first bill or explanation of benefits that they don't understand. "When you're faced with a child with as many medical complications as our son, we were just worried about having him breathe every day and the last thing we thought about were the bills," explains Carol Driver, whose son Dylan has spina bifida.

Some parents may think that insurance will cover all or most of their child's medical expenses or that they can afford their child's care. But each medical service comes with its own price tag, and parents are often shocked to learn that hospital care, surgical procedures, doctor visits, and laboratory tests are separate services with separate bills. "Financially, it was a disaster coming. Her first hospital bill, not including surgery and anesthesia, was $308,000," says Kellie Rollins, whose daughter has a serious disability. Even the typical 10% co-pay can consume a family's financial reserves.

Some parents may overlook costs that are indirectly related to their child's care - costs that can quickly add up. Examples include custom transportation, missed time at work, child care for siblings, increased utility bills, and home renovations, such as ramps for wheelchair accessibility.

There are ways to handle these costs, but you need information to negotiate your way through the health care system.

Understanding the Health Care System
The best way to make sense of bills and prevent financial problems is to take a proactive stance. Learn all you can about your health plan.

Just as you want to know as much as possible about your child's health, you should learn as much as you can about your insurance policy. Which doctors participate in your plan? What services are covered? Learn the meaning of insurance language:

  • co-pay - the part or percentage of the bill you are responsible for
  • deductible - the amount you must pay before your insurance company will pay for services
  • referral - your insurance company may require your child's primary care doctor to refer your child to another doctor or specialist before your insurance company will pay for services performed by another doctor

Understanding your health plan's design and its policies can ultimately save you thousands of dollars.

You may find it useful to get a written copy of your policy from the insurer. Although you may have an enrollment information book from your employer, the actual policy provides specific details about your coverage.

If your insurance company has a Web site, you should check it out for additional information. For example, Blue Cross/Blue Shield, a major health insurer, has a large glossary of terms and a list of frequently asked questions for their customers.

Policies and bills can be confusing, but help is available. These simple steps can help you avoid problems:

  • Locate the resources available within your child's hospital, such as a financial counselor or hospital business office, for answers to your questions about your child's medical expenses.
  • Ask to have a case manager assigned to your child. If the hospital has none on staff, ask your insurance company.
  • Make your child's health care providers aware of your plan's benefits and limitations. They can become your partners in coordinating care with your health plan.
  • Negotiate fees with your child's doctors, clinics, and hospital, and set up realistic payment plans.
  • Organize! Keep a journal and files to record doctor visits, services performed, and fees so detailed information about your child's health care is easily accessible.
  • Know your rights as a health consumer. If your insurance company denies coverage for certain expenses, appeal the decision.
  • Contact your state's department of insurance if you encounter unresolvable problems with your child's health care coverage.

Warning Signs of Financial Trouble
Families may struggle to meet new expenses, particularly if one parent must stop working to care for a child. Regular monthly bills may be put aside or ignored. Debt begins to grow, and a family that has maintained a comfortable lifestyle can find itself headed for trouble.

If the following questions seem all too familiar, it's time to seek help:

  • Do you spend more than you earn?
  • Are you using credit for everyday purchases?
  • Do you make only minimum payments on bills or skip payments entirely?
  • Are your savings inadequate or nonexistent?
  • Do you use cash advances on credit cards to pay other expenses?
  • Are you getting calls from collection agencies?
  • Have you received notices about utility disconnection?

Procrastination can be your worst enemy. Ignoring financial obligations now can lead to even greater problems later, like bankruptcy, loss of assets, and a bad credit record - all of which can affect the entire family. Instead of putting things off, communicate your problem as early as possible to the appropriate person or office.

Negotiating Payments
It's vital that you stay in regular contact with the people on the other end of your bills. As soon as possible, call doctors' offices, billing departments, hospital business offices, creditors, and lending institutions to explain the change in your family's situation. Most people are willing to work with you, but they won't know that you need help unless you tell them.

Some offices may ask you to "put it in writing." Most doctors or hospital social workers are happy to write a letter on your behalf, explaining why more time is needed to pay a bill or to appeal an insurance company decision.

Creditors can be lenient - arranging payment schedules, accepting partial payments, and so on - but they need to hear from you. Even if you can only make a portion of a payment, it will show an attempt to keep up your side of the obligation.

Parents who have gone through this process advise that you:

  • Notify the appropriate offices as soon as you can.
  • Keep in touch with your creditors.
  • Record the names and phone numbers of the people you are dealing with.
  • Document the results of your communications.
  • Pay something on each bill each month as a gesture of good faith.

Where to Get Help
Few people get through a catastrophic illness without needing help of some kind. You may find it difficult to put aside your pride and ask for help, but family and friends usually take genuine pleasure in helping out.

Make use of your case manager, particularly in deciphering bills and making sense of paperwork. Remember to update your case manager with new information and stay in frequent contact. Hospital business offices can be valuable too, by interpreting bills, estimating costs, or contacting your insurance company on your behalf.

Compare notes with other families who have dealt with catastrophic health issues. Their efforts may save you time and energy, and many parents appreciate the support of those who have experienced similar problems.

Short- and long-term financial assistance is also available from various sources, including private as well as government agencies. You may be surprised by the services available and the enthusiasm with which others embrace your needs.

Explore these private organizations:

  • charitable foundations
  • disease or disability-related organizations
  • civic or social welfare associations
  • churches and community groups

Although not all provide financial aid, they may be able to direct you to other sources and services.

Government organizations can also assist in the medical and related care of your child. You don't need to be at poverty level to qualify; you may, in fact, be eligible for programs you never knew existed. Two such government programs that supplement the health insurance of a chronically or seriously ill child are Medicaid and Supplemental Security Income (SSI). As you research various avenues of assistance, ask your case manager about these and other options.

You can also take advantage of free financial advice and support offered by national agencies like the Consolidated Credit Counseling Service (CCCS). The CCCS provides certified financial counselors who help families examine their financial picture and overcome debt. They can negotiate with creditors on your behalf for lower payments, reduced interest rates, and forgiveness of late charges or penalties. You may choose to enroll in their formal debt management program, in which case you would send one payment per month to the CCCS office, which then prorates and disburses your payments to creditors.

The bottom line, though, is that even as you seek financial assistance, you will need to reduce your expenses.

Reducing Your Expenses
To ensure financial stability, you must learn to cut your expenses by making lifestyle changes. When you have a sick child, your priorities will shift. Going out to dinner may no longer be in your budget; paying the electric bill has to be.

You may find it helpful to compare monthly costs against your income, then eliminate any expenses that aren't completely necessary. Other tips:

  • Avoid impulse purchases.
  • Eliminate "luxuries" such as cable TV or cell phones.
  • Switch to generic prescriptions when possible.
  • Buy groceries in bulk and take advantage of coupons and store specials.
  • Use cash instead of credit when possible.

By making a conscious decision to reduce spending, acting early, asking questions, and learning how to find and accept help, you can protect your family's future.

Reviewed by: Steve Dowshen, MD
Date reviewed: February 2001

Source:  KidsHealth www.KidsHealth.com is a project of The Nemours Foundation which is dedicated to improving the health and spirit of children. Today, as part of its continuing mission, the Foundation supports the operation of a number of renowned children's health facilities throughout the nation, including the Alfred I. duPont Hospital for Children in Wilmington, Delaware, and the Nemours Children's Clinics throughout Florida. Visit The Nemours Foundation to find out more about them and its health facilities for children http://www.nemours.org/no/ 
Consolidated Credit Counseling Service
This group's mission is to assist families throughout the United States in ending financial crisis and to solve money-management problems through education and professional counseling.

Federal Consumer Information Center (FCIC)-(719) 948- 4000
Established in 1970 as a separately funded operation within the U.S. General Services Administration, the FCIC helps federal agencies and departments develop and distribute useful information to the public. Call them at:

Financial Management During Crisis (215) 643-0763

To obtain a copy of FINANCIAL MANAGEMENT DURING CRISIS, a video for parents produced by The Nemours Foundation, contact: The Kelly Anne Dolan Memorial Fund P.O. Box 556 Ambler, PA 19002

Federal Trade Commission (FTC)-(202) FTC-HELP
The FTC enforces a variety of federal antitrust and consumer protection laws. Call them at:

National Foundation for Consumer Credit
NFCC is a national nonprofit network of centers designed to provide assistance to people dealing with stressful financial situations. Call: (800) 388-2227.

United States Office of Consumer Affairs Helpline (800) 664-4435