Juvenile-HD

HOME

INDEX Page
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
SECTION 1 - AT RISK
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
SECTION 2 - GENETIC TESTING
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
SECTION 3 - JHD
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
SECTION 4 - SYMPTOM RECOGNITION
Parent Resources
8 Fears of A Chronic Illness
Anxiety/Apathy/Irritability~HD
Anxiety, Fears & Phobias
Apathy-Physician's Guide
Ataxia
Attention-Perceptual/Unawareness Physician's Guide
Bed/Pressure Sores
Bed/Pressure Ulcer Guideline
Behavior Management
Bi-Polar Disorders
Botulinum toxin therapy
Bradykinesia
Caring Tips
Child Abuse-Reconizing Signs
Chorea-Physician's Guide
Chorea
Cognitive/Decision Making/Impulsivity
Cognitive-Short Tips
Contractures~Joints Locking
Dehydration-Physician's Guide
Dehydration
Delirium
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
Dyslexia Resources
Dystonia
Dystonia/Rigidity & Spasticity Physician's Guide
Dystonia-Predominant Adult-Onset HD
Epileptic Seizures and Epilepsy
Epilepsy-Seizures~PG
-Seizures ~Special Populations
Falling~Safety
Falling - Subdural Hematoma Risk
Fevers - Unexplained
Fevers, sweating & menstural cycles in HD
GERD (Stomach)
HD Principle Treatments
Hallucinations/Psychosis~PGHD
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
Pneumonia-Advanced Stages
Pneumonia - Aspirated (Inhaled)
Prosody - Social Impairment
Sexuality~Physician's Guide
Skins Sensitivity
Sleep Disorders
Smoking-Physician's Guide
Spasticity
Stress
Tremors
Why Certain Symptoms Occur
Symptom & Treatment Resources
SECTION 5 - COMMUNICATION
Communication Resources
Communication Problems
Communication Strategies For HD~Jeff Searle
SECTION 6 - EATING/SWALLOWING/NUITRITION
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
Resources-Drinks/Shakes
-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
SECTION 7 - THERAPIES
Finding a Therapist - Behavoir
What Is A Physiotherapist?
Physical Therapy In HD
Speech-Language Therapy
Therapy Descriptions
Therapy Resources- Easter Seal
Therapy Resources
SECTION 8 - MEDICATIONS
HD Treatments
Medications-Movement Disorders
Medication/Emergency Info Forms
Cutting Prescriptions
Drugs-Look 'Em Up
-Adolescents Under 25
-Antidepressant Adverse Effects
-Anti-psychotic
-Anxiety-Antidepressant
A-Z Mental Health Drugs
-Creatine
-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
-Celexa/Luvox/Paxil/Prozac/Zoloft
-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
SECTION 9 - SURGERIES
Surgery-Movement Disorders
o Surgery Resources
SECTION 10 - PROCEDURES
Clinic Visits-How To Prepare
CT Scans, MRI's etc.
Swallowing Tests
Tests Commonly Used
o Procedures Resources
SECTION 11- ALCOHOL/DRUGS
Alcohol-Parent's Guide
Alcohol-Talking To Your Child
Drugs-What To Do?
Drugs-Talking To Your Child
Disciplining-Ages 0-13 & Up
SECTION 12- SUICIDE
Straight Talk On Suicide
Teen Suicide-You Need To Know
o Suicide Resources
SECTION 13 - DIVORCE
Divorce & Child Stress
Tips For Divorcing Parents
SECTION 14 - DISABILITY ISSUES
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
SECTION 15 - ASSISTIVE TECHNOLOGY
Child Assistive Technology
Adaptive Equipment Resources
Products
SECTION 16 - EMOTIONAL ISSUES
Signs of Unhealthy Self-Esteem
Emotional Behavior Links
o Emotional Support Resources
SECTION 17 - GRIEF
Helping Child Deal With Death
o Grief Addtional Resources
SECTION 18 - ADD/ADHD
ADD & Teens
Conduct Disorders
FAQS & Related Info
Understanding AD/HD
What Is AD/HD?
Research Articles
Resources
SECTION 19 - HD SUPPORT GROUPS
HD Support Groups
National Youth Association
SECTION 20 - HD LINKS
HD Links
Related Resources
Tips For Friends
SECTION 21 - BENEFITS/INSURNACE
HD Disability
Benefits Check UP - See What You Can Get
Medical Insurance Bureau's Facts On You!
Medicare-Medicaid
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
SECTION 22 - ARTICLES/JHD
JHD and ADD
SECTION 23 - CAREGIVING
Articles-Resources
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
SECTION 24 - BIO
Our Personal Experience
Coping At The End
Kelly E. Miller
Song & Verse
Letter From My Heart
GUESTBOOK
Medicare Rights-Home Health & Hospice

INDEX Page

From:
The Medicare Rights Center  (MRC) which is a not-for-profit organization dedicated to ensuring that older adults and people with disabilities get good, affordable health care. The MRC website http://www.medicarerights.org/Index.html offers helpful and reliable Medicare information for consumers and professionals.
 
Click on section titles below to get full information available on MRC's webpage.
 
Medicare Rights on Home Health & Hospice Care
Consumer Booklet    
 

Advanced illnesses create new needs for patients and place new demands on families. People with advanced illnesses may have special skilled nursing or skilled therapy needs, or may need help to manage uncomfortable symptoms. They may prefer to receive care at home, and families may need assistance with care giving and counseling responsibilities to help them cope with advanced illnesses .

Medicare offers two benefit options that can help cover these needs. The Medicare Home Health Benefit can be combined with other Medicare hospital and medical benefits to meet the needs of any advanced illness. The Medicare Hospice Benefit will organize a team to help people who are terminally ill live as comfortably and as well as possible for the duration of their lives. Patients can get these benefits whether they are in traditional Medicare or a Medicare HMO.

Home Health Care 

Home health care is care provided at home for homebound patients who need skilled nursing or skilled therapy. Whether the illness is acute, chronic or advanced, a home health agency can:

Deliver skilled nursing, skilled therapy, and home health aide services in the patient's home and supplement the care giving of the family.
Provide practical guidance on planning for the illness, and counseling to the patient and family
Provide rehabilitative, maintenance or palliative care in the home.

Home health care provides the services necessary to care for patients with many different kinds of illnesses.

DEFINITION OF SKILLED CARE

Medically reasonable and necessary care performed by a skilled nurse or therapist. If a home health aide (someone who provides help with bathing, eating and toileting) or other person can perform this service, it is not considered "skilled care."

Hospice 

Hospice (pronounced HOS-pis) is a unique kind of service provided to people with advanced illness and limited life expectancies. When the treatment goals have changed from cure to care, a hospice can:

Manage the patient's pain and other symptoms so that the patient and family can make the most of the time that remains.
Deliver palliative care in the patient's home, or in a homelike setting, and supplement the care giving of the family.
Provide practical, emotional and spiritual support to both the patient and the family.

Hospice neither shortens nor prolongs life. Instead, it concentrates on improving the quality of life as much as possible.

DEFINITION OF PALLIATIVE CARE

The care of patients whose disease is not responsive to curative treatments or interventions. Palliative care consists of relief of pain and nausea, and psychological, social and spiritual support services.

Eligibility  

Home Health Care

Under Medicare, home health patients must:

  • Have Medicare Part A or B.
  • Be homebound. Leaving home must require a considerable and taxing effort.
  • Require skilled nursing or skilled therapy services on an intermittent or part-time basis. Home health aide services will not be covered without an accompanying skilled need.

    You need not have been hospitalized to qualify. You can be eligible whether your condition is acute, chronic or terminal.

    Hospice

    Under Medicare, hospice patients must:

  • Have Medicare Part A.
  • Be certified by an attending physician and the hospice medical director to have an advanced illness with a life expectancy of six months or less.
  • Consent in writing to choose palliative rather than curative care. You need not be in a severely deteriorated physical condition or in a medical crisis to qualify.

    TALKING WITH PHYSICIANS ABOUT HOME HEALTH AND HOSPICE
    Doctors and social workers who work with patients with advanced illnesses recommend the following tips:
    1. Do not wait for your doctor to suggest home health care or hospice. Feel free to start discussions about care options.
    2. Ask your doctor for a clear statement of prognosis for the advanced illness. Ask what symptoms and clinical evidence the prognosis is based upon, and what criteria or new evidence would change the prognosis.
    3. Ask what needs or symptoms that you now have or might have would qualify you for home health or hospice.
    4. Bring up the treatment goals that are important to you, whether they be maximizing the possibility of cure, maximizing the length of life, managing pain and discomfort, or staying home as much as possible.
    5. Discuss the practical implications of choosing the home health or hospice benefit with a social worker.

    Home Health Coverage

    If you qualify, you may receive up to a total of 35 hours per week of skilled nursing and home health aide services. You may receive additional hours of skilled therapy and medical social services. The amount of care allowed in the plan of care depends upon your health status. Go to above section to read full details.

    Hospice Coverage 

    The hospice benefit provides four levels of care: I) routine home care; 2) continuous home nursing care; 3) respite care; and 4) general inpatient care. Covered services include: (go to link)

    To Obtain Home Care 

    You must be certified by your doctor to meet the requirements for eligibility. Your doctor should specify the skilled services, frequency and duration of care needed.
    Your doctor's referral or letter of certification must be sent to a Medicare-Certified Home Health Agency (CHHA). The CHHA will send a nurse to evaluate you for a plan of care.


    WHAT CAN YOU DO IF YOU ARE DISATISFIED OR DENIED CARE?
    The procedures for grievances and appeals in home health agencies and hospice agencies are included in the papers given to patients by agency nurses during the initial evaluation.
    1. You should discuss complaints and requests for further services with the nurse administering the care plan.
    2. You should complain to the program administrator (or, in hospice, the supervising physician) of the agency. Also, your doctor may be able to help you work with the CHHA to obtain care. Ask your doctor to communicate with the CHHA about necessary changes to your plan of care.
    3. You may contact the State Department of Health, or the federal government at 1800-HHS-TIPS, with complaints. You may also try changing agencies until you find one that delivers satisfactory care. You may change CHHAs at any time, and hospices once every benefit period.

    To Elect Hospice 

    Medicare HMOs
    Managing Pain 

    Costs of Care 

    Resources for Caregivers