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Juvenile-HD

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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
IFSP Early Intervention Process
 

THE INDIVIDUAL FAMILY SERVICE PLAN (IFSP)
Mary Beth Bruder

An Individualized Family Service Plan (IFSP) documents and guides the
early intervention process for children with disabilities and their families.
 
The IFSP is the vehicle through which effective early intervention is
implemented in accordance with Part C of the Individuals with Disabilities
Education Act (IDEA). It contains information about the services necessary
to facilitate a child's development and enhance the family's capacity to
facilitate the child's development.
 
Through the IFSP process, family members and service providers work as
a team to plan, implement, and evaluate services tailored to the family's
unique concerns, priorities, and resources.

According to IDEA, the IFSP shall be in writing and contain statements of

  1. the child's present levels of physical development,
    cognitive development, communication development,
    social or emotional development, and adaptive
    development.
  2. the family's resources, priorities, and concerns relating
    to enhancing the development of the child with a
    disability;
  3. the major outcomes to be achieved for the child and the
    family; the criteria, procedures, and timelines used to
    determine progress; and whether modifications or revisions
    of the outcomes or services are necessary;
  4. specific early intervention services necessary to meet the
    unique needs of the child and the family, including the
    frequency, intensity, and the method of delivery;
  5. the natural environments in which services will be provided,
    including justification of the extent, if any, to which the
    services will not be provided in a natural environment;
  6. the projected dates for initiation of services and their
    anticipated duration;
  7. the name of the service provider who will be responsible for
    implementing the plan and coordinating with other agencies
    and persons; and
  8. steps to support the child's transition to preschool or other
    appropriate services.
U.S. Department of Education rules (1993) require that non-Part C
services needed by a child, including medical and other services,
are also described in the IFSP, along with the funding sources for
those services. The statute allows parents to be charged for some
services. If a family will be charged, this should be noted in the IFSP.

How the IFSP Differs from the IEP

The IFSP differs from the IEP in several ways:

  • It revolves around the family, as it is the family that is the
    constant in a child's life.
  • It includes outcomes targeted for the family, as opposed to
    focusing only on the eligible child.
  • It includes the notion of natural environments, which encompass
    home or community settings such as parks, child care, and gym
    classes. This focus creates opportunities for learning interventions
    in everyday routines and activities, rather than only in formal,
    contrived environments.
  • It includes activities undertaken with multiple agencies beyond the
    scope of Part C.   These are included to integrate all services  into
    one plan.
  • It names a service coordinator to help the family during the
    development, implementation, and evaluation of the IFSP.

STEPS THAT LEAD TO EFFECTIVE IFSPs

Identify Family Concerns, Priorities, and Resources

The family's concerns, priorities, and resources guide the entire IFSP
process. Early intervention should be seen as a system of services
and supports available to families to enhance their capacity to care
for their children. The notion of partnership between the intervention
team and the family must be introduced and nurtured at this beginning
point of the IFSP process.
 
Identify the Family's Activity Settings
 
All children develop as the result of their everyday experiences. It is
important to document valued, enjoyable routines (bath time, eating,
play activities, etc.) and analyze them to see if they offer the sustained
engagement that leads to learning opportunities.   Likewise, it is
important to identify the community activity settings (e.g., child care,
gymboree, swimming) that provide opportunities for learning.
 
Conduct a Functional Assessment
 
 An effective assessment process
  • addresses the family's questions about enhancing their
    child's development, focusing on each family member's
    concerns and priorities
  • collects information for a specific purpose, for example,
    the evaluation conducted by the early interventionist
    at the beginning of the IFSP process determines if the
    child is eligible for services
  • reflects a complete and accurate picture of the child's
    strengths, needs, preferences for activities, materials,
    and environments
  • has a person familiar to the child conduct observations and
    other assessments in settings familiar to the child (e.g., home,
    outdoor play area, child care program)
Collaboratively Develop Expected Outcomes.
 
After assessment information is collected, the team meets to review the
information and the family's concerns, priorities, and resources to develop
statements of expected outcomes or goals. Active family involvement is
essential. Collaborative goals focus on enhancing the family's capacity
and increasing the child's participation in valued activities.
 
Assign Intervention Responsibilities.
 
After outcomes are identified, the early intervention team assigns
responsibilities for intervention services that support those outcomes.
An IFSP requires an integrated, team approach to intervention. Using
a transdisciplinary team model is one method of integrating information
and skills across professional disciplines. In the transdisciplinary model,
all team members (including the family) teach, learn, and work together
to accomplish a mutually agreed upon set of intervention outcomes.
 
Individuals' roles are defined by the needs of the situation rather than
by the function of a specific discipline.
 
In a transdisciplinary model, one or a few people are primary implementers
of the program. Other team members provide ongoing direct or indirect
services, such as consultation. For example, an occupational therapist can
observe a toddler during meals, then recommend to the parent how to
physically assist the child.
 
Identify Strategies to Implement the Plan.
 
This step involves working closely as a team to increase learning opportunities,
to use the child's surroundings to facilitate learning, to select the most effective
strategies to bring about the desired outcomes, and identify reinforcers that
best support the child's learning.
 
Implementation may involve a toddler participating in a library story hour one
afternoon a week; a physical therapist showing family members how to use
adaptive equipment; or a service coordinator completing the paperwork to pay
for a child's transportation from his or her home to needed services.
 
Intervention strategies should help promote generalization of outcomesi.e.,
the child performs new skills in a variety of environments after intervention has
ended. For example, both service providers and family members can encourage
a child to request desired objects (e.g, toys) with gestures in numerous
environments (e.g., home, playgroup, child care).
 
Interventions should target several outcomes during one activity. When a child
participates in an activity, he or she uses a variety of skills from a number of
developmental areas. For example, during mealtimes, a toddler may use
communication skills to request more juice, fine motor skills to grasp a spoon,
a social skills to interact with a sibling.
 
Intervention strategies should help a child become more independent in his or
her world. The selected strategies might involve offering physical assistance
during mealtimes, prompting the correct response during a self-care routine, or
providing simple pull-on clothing to enable a child to dress without assistance.
 
Interventions provided within natural environments should look like a "typical activity."
For instance, a child learning to develop her fine motor skills should be encouraged
to color, draw pictures, play with puzzles, build with blocks, pick up her toys, use
eating utensils, play finger games, etc. Ideally, interventions should
  • Be embedded in everyday natural environments.
  • Emphasize the acquisition of functional competencies.
  • Make it possible to increase a child's participation within the environments.
  • Include both social and non-social activities

Evaluate Early Intervention to Ensure Quality

Both ongoing and periodic evaluations are essential to any early
intervention program. An evaluation may focus on a child's progress
toward obtaining desired outcomes and upon the quality of the
intervention program itself. Ongoing monitoring of the child's progress
requires keeping records in a systematic manner in order to answer
such critical questions as
  • To what extent and at what rate is the child making
    progress toward attaining outcomes?
  • Are the selected intervention strategies and activities
    promoting gains in development?
  • Do changes need to be made in the intervention plan?
Periodically reviewing the IFSP provides a means of sharing results about
the child's progress and integrating these results into the plan. Part C of
IDEA requires that the IFSP be evaluated and revised annually and that
periodic reviews be conducted at least every six months (or sooner if
requested by the family). This ongoing process provides a continual support
to the family and child as they realize their own strengths and resources
to help their child learn.
 
Reprinted  from:
The ERIC Clearinghouse on Disabilities and Gifted Education (ERIC EC)
The Council for Exceptional Children
1110 N. Glebe Rd.
Arlington, VA 22201-5704
Toll Free: 1.800.328.0272
E-mail:
ericec@cec.sped.org
 
Resources
Brown, W., Thurman, S.K., & Pearl, L.F. (1993). Family centered early intervention
with infants and toddlers:innovative cross-disciplinary approaches. Baltimore, MD:
Paul H. Brookes Publishing Co.
 
Division for Early Childhood. (1993). DEC recommended practices: Indicators of quality
in programs for infants and young children with special needs and their families. Reston,
VA: The Council for Exceptional Children.
 
Lerner, J.W., Lowenthal, B., and Egar, R. (1998). Preschool children with special needs.
Needham Heights, MA: Allyn & Bacon.
 
Zhang, C. & Bennett, T. (2000). The IFSP/IEP process: Do recommended practices address
culturally and linguistically diverse families? (CLAS Technical Report #10). Champaign, IL:
University of Illinois at Urbana-Champaign, Early Childhood Research Institute on Culturally
and Linguistically Appropriate Services.
 
ERIC Digests are in the public domain and may be freely reproduced and disseminated, but please
acknowledge your source. This digest was prepared with funding from the Office of Educational
Research and Improvement (OERI), U.S. Department of Education, under Contract No. ED-99-CO-0026.
The opinions expressed in this publication do not necessarily reflect the positions or policies of OERI
 or the Department of Education.  

December 2000