care notebook - mission health system

Update 2017

Care Notebook

Child’s Name

TABLE OF CONTENTS Acknowledgements Introduction to the Care Notebook All About my Child Quick Reference (Family Contact Information; Emergency Contact Information; Doctor; Allergies; Insurance Information) Important Contact Information My Child’s Care Coordinators Things You Need To Know About My Child to Support Him / Her My Child Strengths My Child’s Birth Story Medical Information Medical Home Overview Having A Medical Home Means Your Child’s Care Is: Preventive Pediatric Health Care Chart Medical and Developmental History Height and Weight My Child’s Teeth Medication Log Allergic Reaction Tracking Form My Child’s Allergies Tests / X-Rays / Labs Emergency Department (Room) Visits / Hospitalizations My Child’s Emergency Medical Care Equipment Log Disposal of Unused Medications Storage of Prescription Medications Community Alternatives Program for Children (CAP-C) Notes to Take To the Doctor Immunization Chart Brith-18 years* Portable Medical Summary- Emergency Information Form for Children with Special Needs Infant-Toddler Program Plan (Birth to 3 years old) Notes To Take To The Individual Family Service Plan (IFSP) IFSP Issues / Resolution Log Transition Planning into the Preschool Program Vision for the Future Form Notes / Issues for Review at the Next IFSP Meeting My Child’s IFSP Pre-School Program Plan (3-5 years old) Notes To Take To The Individual Education Plan (IEP) IEP Issues / Resolution Log Notes / Issues for Review at the Next IEP Meeting Vision for the Future Form My Child’s IEP

School Age K – Transition Program Plan Notes To Take To The Individual Education Plan (IEP) IEP Issues / Resolution Log Notes / Issues for Review at the Next IEP Meeting A Quick Summary of Transition Planning School Information

My Child’s IEP

Transition to Adulthood Vision for the Future Form Health Care Coverage Transition Changing Role For Youth Check List Transition Changing Role For Families Check List Children’s Special Health Care Services Transition Timeline for Youth and Families Health Care Transition Planning Sample Form My Child’s Transition to Adult Health Care Plan

Mental Health/Developmental Disability My Child’s Person Centered Plan or Individual Support Plan Questions / Concerns Form for Care Providers

Public Program/Financial Resources Medicaid Fact Sheet Health Choice Social Security Income (SSI) Fact Sheet Food Assistance Program Prescription Assistance Fact Sheet

Legal Papers Legal Health Issues Fact Sheet Medical Power of Attorney My Child’s Legal Paper ie. Guardianship, Medical Power of Attorney

Helpful Websites, Resources Form Alphabet Soup Acronym Index Helpful Websites Make a Calendar Form Diet Tracking Form Care Schedule Form Appointment Log Sign-In Log

ACKNOWLEGEMENTS

The basic content of this notebook was revised and edited by the Family Involvement Sub-Committee of the

Innovative Approaches grant project through the Buncombe County Department of Health.

Madison County Department of Health

Revised 2017

This notebook can be downloaded for free at:

http://www.missionchildrens.org/family-support-network.php


INTRODUCTION TO THE

CARE NOTEBOOK

What is this notebook for?

A way to simplify record keeping and store information about many services available to you and your child. A place to collect and organize the important papers that accumulate as your child grows. To keep track of information you receive for and about your child as he or she journeys through childhood and beyond.

How to get the most out of this notebook:

Take your notebook with you to all scheduled appointments. Update the information in each section when you get new information. Review your child's health care with any health care provider or anyone who is not familiar with your child.

Make this notebook work for you:

Create your own sections. Remove and rearrange pages to fit your needs. Personalize it with drawings, stickers, photographs, and special articles you find helpful.

QUICK REFERENCE

Child’s Home Address:

Primary Care Doctor/Medical Home Provider

Name:

After hours Phone:

Phone Number: Fax:

Urgent Care - After Hours - Advice Nurse

Name:

Phone:

Family Contact Information

Name: Work Phone:

Home Phone: Cell Phone:

Name: Work Phone:

Home Phone: Cell Phone:

Emergency Contact: Relationship:

Home Phone: Work Phone:

Cell Phone:

Allergies

Food, Medication, etc.:

Insurance Information

Insurance: Policy #:

Phone: Subscriber #:

Fax #: Contact Person:

Insurance: Policy #:

Phone: Subscriber #:

Fax #: Contact Person:

IMPORTANT CONTACT INFORMATION

Life-Threatening Emergency: Call 911

Primary Care Doctor - Medical Home

Name:

Address:

City: Zip:

Care Coordinator:

Phone: Fax:

Hours: Email:

Urgent Care - After Hours - Advice Nurse

Name:

Address:

City: Zip:

Phone: Fax:

Hours: Email:

Primary Hospital Hospital:

Information Phone Number:

Address:

Emergency Room Phone Number:

Special Transportation

Transportation Agency:

Contact Name: Phone:

Address:

Transportation Agency:

Contact Name: Phone:

Address:

Specialist Doctors - Therapists - Other Care Providers

Provider: Specialty:

Clinic: Phone:

Address: Fax:

Hours: Email:


Clinic: Phone:

Address: Fax:

Hours: Email:


Clinic: Phone:

Address: Fax:

Hours: Email:


Clinic: Phone:

Address: Fax:

Hours: Email:

Medical Equipment Supplier Supplier: Product:

Contact: Phone:

Address: Fax:

Hours: Email:

Notes:

Community Agencies

Agency:

Service:

Contact: Phone:

Address: Fax:

Hours:

Email:

Agency:

Service:

Contact: Phone:

Address: Fax:

Hours: Email:

Notes:

Home Nursing Agencies

Agency: Service:

Contact: Phone:

Address: Fax:

Hours: Email:

Notes:

Agency: Service:

Contact: Phone:

Address: Fax:

Hours: Email:

Notes:

Agency: Service:

Contact: Phone:

Address: Fax:

Hours: Email:

Notes:

Infant Program - Preschool - School School: Teacher:

Address: Phone:

Notes: Email:

School: Teacher:

Address: Phone:

Notes: Email:

School Nurse Name: Phone:

Address: Email:

Notes:

Child Care Provider Name: Phone:

Address: Email:

Notes:

Name: Phone:

Address: Email:

Notes:

Respite Care Provider Name: Phone:

Address: Email:

Notes:

Pharmacy Used for Prescriptions Pharmacy: Product:

Pharmacist: Phone:

Address: Fax:

Hours: Email:

Notes:

Dentist - Orthodontist Name: Phone:

Address: Fax:

Hours: Email:

Notes:

Social Worker Name: Phone:

Address: Email:

Notes:

Public Health Department - Nurse Name: Phone:

Address: Email:

Nutritionist Name: Phone:

Address: Email:

Other Name: Phone:

Title/Agency: Notes:

Name: Phone:


Name: Phone:


Name: Phone:


Name: Phone:


Name: Phone:


Name: Phone:


MY CHILD’S CARE COORDINATORS

Agency:

Care Coordinator: Phone:

Address: Fax:

City: Zip:

Notes:

Agency:


Address: Fax:

City: Zip:

Notes:

Agency: Care Coordinator: Phone:

Address: Fax:

City: Zip:

Notes:

Agency:


Address: Fax:

City: Zip:

Notes:

THINGS YOU NEED TO KNOW ABOUT MY CHILD TO SUPPORT HIM / HER

Name my child prefers: Date:

Some things my child likes are:

My child likes it when you:

My child doesn’t like it when you:

My child cooperates best / is motivated when you:

My child’s strengths / personality at this age are:

MY CHILD

(Place a photo of your child here)

MY CHILD’S BIRTH STORY

Date of birth:

MEDICAL HOME OVERVIEW

Establish a Medical Home for your child: a place where you take your child for all health care needs. According to other parents, the following ideas describe a good Medical Home:

A. Quick response to calls concerning my child.

B. Know my child’s past history.

C. Update-to-date knowledge regarding my child’s medical concerns.

D. Community resources available.

E. Respect for parents’ concerns.

F. Respect for parents’ knowledge of their child’s needs.

G. Sees each child behind the disability and willing to provide medical care.

H. Patient with child’s behavior.

I. Family centered approach to working with my child.

J. Provides good coordination with all specialists and follows up on results from specialists.

K. Not “territorial” with treatment options.

L. Willing to discuss concerns regarding proposed treatment and/or alternative treatments suggested by parents.

M. Advocate and suggest services the family may benefit from.

N. A good listener and open communication lines with parents / specialists/ care givers.

O. Cooperation of staff to assist in getting information to doctor or providing information (records) to child’s specialist, case manager, etc.

P. Respect family’s religion and ethical beliefs.

Q. Respect for parents’ time.

For More Information About a Medical Home:

National Center for Medical Home Implementation http://www.MedicalHomeInfo.org/

Center for Medical Home Improvement http://www.MedicalHomeImprovement.org/knowledge/families.html

HAVING A MEDICAL HOME MEANS YOUR CHILD’S CARE IS: 3

1. Accessible

Care is provided in your community

The doctor’s office accepts your insurance

The location meets American Disabilities Act (ADA) requirements

Access to health advice or care is available around the clock, 365 days per year

If needed, the office is accessible by public transportation

2. Continuous

The same doctors are available from infancy through adolescence

Communication occurs between doctors and specialists to ensure your child’s needs are met

at any age

Assistance is provided to secure a medical home for adolescents transitioning to adult care

3. Comprehensive

Preventive and primary care is provided

Growth and development assessments are conducted when appropriate

Care coordination is emphasized and exercised between all doctors for your child

Referrals to specialty care services are available and offered when needed

Child/family counseling and health education are a part of visits or available upon request

Your doctor is knowledgeable about community resources and shares information

4. Coordinated

You and your family are linked to appropriate support, educational, and community services

Your doctor’s office staff communicate and work with all agencies to ensure all your child’s

needs are met

A centralized record containing important information on your child’s care will be

maintained by you, your doctor and his or her office staff

5. Compassionate

Concern for the well being of your child and family as a whole is shown by the doctor

The doctor shows understanding for the variety of emotions your family may have around

having a child with a genetic condition

Office staff are flexible and respond to requests and needs

Office staff offer privacy when requested

Appointment times are scheduled with consideration of you and your family’s needs

6. Culturally Effective

Your family’s cultural background is recognized, valued, and respected

Office staff are sensitive to stereotypes and cultural assumptions

Multi-language materials and translation services are made available as needed

7. Family-Centered

Office staff recognize that you and your family are the principle caregivers and the center of

strength and support for your child

Your doctor and family share the responsibility in decision making

3 Adapted from: What is a medical home? And what does it mean for you and your child?

University at Chicago, Division of Specialized Care for Children, publication 40, 16, 2003

MEDICAL & DEVELOPMENTAL HISTORY

Child’s Name: Birth Date:

Pregnancy History

Mother’s age at start of pregnancy:

Length of Pregnancy: Maternal Weight Gain:

Prescribed or over the counter medications taken during pregnancy (include vitamins):

Month first felt baby move: ____________ Months

During pregnancy, baby was: _____Quiet ____ Active ____ Very Active

As the pregnancy progressed, were there any changes in your baby's activity level? If yes, please describe:

Concerns, complications, or illnesses during pregnancy:

Previous number of pregnancies: Number of living children:

Describe any difficulties during previous pregnancies:

Labor and Delivery

Labor for my child was: ____ Uncomplicated ____ Complicated / Difficult

Describe any difficulties:

Was internal fetal monitoring used during labor?

Did membranes rupture? If yes, number of hours prior to delivery:

Were you awake during delivery?

Labor was ____ Spontaneous ____ Induced

Was anesthesia used? If yes, what type?

Type of birth: o ____ Vaginal: ____ Head First ____ Breech ____ Forceps used o ____ Cesarean Section. Reason for C-section:

Baby was born: ____ Full-term ____ Late ____ Premature (If premature, # of weeks: _______)

Birth / Early Infancy Birth weight: Length:

Head Circumference: APGAR score at 1 minute:

Did baby cry immediately? APGAR score at 5 minutes:

Did baby need help with breathing? If yes, how long?

Baby was in hospital _______ days _______ weeks

Was baby in NICU (neonatal intensive care unit)? If yes, how long?

Was medication prescribed for the baby?

If yes, describe reason.

While in hospital, did baby require special care after birth (such as therapy, evaluation by a specialist)?

If yes, describe reason.

Describe any difficulties with the baby immediately after birth:

Did the baby have difficulties during the first months:

____ Feeding ____ Alertness ____ Jaundice

____ Sleeping ____ Movement ____ Other:

Has your child had any of the following illnesses? If yes, list at what age.

_____Chicken Pox _____German Measles _____Hepatitis _____Mumps _____Whooping Cough _____Meningitis _____Measles _____CMV Other:

Has your child had difficulty with any of the following? If yes, list at what age.

_____Skin rashes _____Anemia _____Diarrhea _____Speech _____Breach holding spell _____Coordination _____ Swallowing _____ Turns Blue _____ Frequent Falling _____ Sucking _____ Staring Spells _____ Vomiting _____ Respiratory Problems _____ Asthma _____ Fainting Spells _____ Dental _____ Ear Infections _____ Heart _____ Allergies _____ Feeding _____ Constipation _____ Special dietary considerations _____ Other:

Has your child seen a vision specialist? If yes, give doctor’s name and reason for visit.

Has your child seen an ear specialist? If yes, give doctor’s name and reason for visit.

Has your child had a hearing test? If yes, give reason for visit.

Family Medical History

For the following, please check any conditions present in the child’s biological family. If checked, please explain in space provided below.

Mother Mother’s Family Father Father’s Family

Birth Defects:

Inherited Disorder:

Infant Deaths:

Learning Problems:

Mental Retardation:

Muscle Disease/Weakness:

Neurological Disease:

Substance Abuse:

Mental Illness:

Vision Disorder:

Mother Mother’s Family Father Father’s Family

Hearing Disorder:

Epilepsy/Seizures:

Diabetes:

Behavior Disorders:

Emotional Disorders:

Other health problems:

Explanation:

Does any OTHER family member have difficulties similar to your child’s? If yes, please explain.

Child’s Developmental Milestones

List the age that your child first did the following.

Age: Age: Held head steady when being carried _______ Drank from a cup _______ Rolled from back to tummy _______ Responded to name _______ Sat up _______ Said first word _______ Crawled on hands and knees _______ Fed self with fingers _______ Pulled to standing _______ Used a spoon _______ Walked holding on to things _______ Spoke with 3 or more word phrases _______ Walked alone _______ Toilet trained _______ Age you first suspected your child had a problem _______

Social History

List any siblings or other people living in household.

Name: Relation: Birth Date:

Other Information

HEIGHT & WEIGHT LOG

Date: Height: Weight: Percentile: Head Circumference:

Comments related to child’s growth:

MY CHILD’S BABY TEETH

Record when your child’s teeth emerge and are lost in the diagram below.

The following chart shows when primary teeth (also called baby teeth or deciduous teeth) erupt and shed. It’s important to note that eruption times can vary from child to child.

UPPER TEETH WHEN BABY TOOTH EMERGES

WHEN BABY TOOTH FALLS OUT

Central Incisor 8 – 12 Months 6 – 7 Years Lateral Incisor 9 – 13 Months 7 – 8 Years Canine (Cuspid) 16 – 22 Months 10 – 12 Years First Molar 13 – 19 Months 9 – 11 Years Second Molar 25 – 33 Months 10 – 12 Years

LOWER TEETH WHEN BABY TOOTH EMERGES

WHEN BABY TOOTH FALLS OUT

Second Molar 23 – 31 Months 10 – 12 Years First Molar 14 – 18 Months 9 – 11 Years Canine (Cuspid) 17 – 23 Months 9 – 12 Years Lateral Incisor 10 – 16 Months 7 – 8 Years Central Incisor 6 – 10 Months 6 – 7 Years

MY CHILD’S PERMANENT TEETH

The following chart shows when permanent teeth emerge. Record when your child’s permanent teeth emerge.

UPPER TEETH WHEN TOOTH EMERGES

MY CHILD’S TEETH EMERGED: RIGHT SIDE LEFT SIDE

Central Incisor 7 – 8 Years

Lateral Incisor 8 – 9 Years

Canine (Cuspid) 11 – 12 Years

First Premolar Molar (First Bicuspid) 10 – 11 Years

Second Molar (Second Bicuspid) 10 – 12 Years

First Molar 6 – 7 Years

Second Molar 12 – 13 Years

Third Molar (Wisdom Tooth) 17 – 21 Years

LOWER TEETH WHEN TOOTH EMERGES

MY CHILD’S TEETH EMERGED: RIGHT SIDE LEFT SIDE

Third Molar (Wisdom Tooth) 17 – 21 Years

Second Molar 11 – 13 Years

First Molar 6 – 7 Years

Second Premolar (Second Bicuspid) 11 – 12 Years

First Premolar (First Bicuspid) 10 – 12 Years

Canine (Cuspid) 9 – 10 Years

Lateral Incisor 7 – 8 Years

Central Incisor 6 – 7 Years

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MY CHILD’S ALLERGIES

Food Allergies:

Medication Allergies:

Other Allergies (cats, dogs, dust, grass, etc.)

TESTS / X-RAYS / LABS

Date: Type of Test: Location of Test: Results:

EMERGENCY DEPARTMENT (ROOM) VISITS / HOSPITALIZATIONS

DATE: HOSPITAL: REASON: OUTCOME:

MY CHILD’S EMERGENCY MEDICAL CARE PLAN

If your child has frequent emergency issues, consider putting together a plan with your medical home which states how issues are to be handled. Issues to address in this emergency medical plan may be:

Response time

How to get in contact with your doctor after hours

Flag child’s folder to identify ‘Special Needs Child’

Specific support staff to contact, etc.

EQUIPMENT LOG Keep an ongoing record of the equipment that your child uses (such as a wheelchair, communication systems, etc.). Draw a single line through or use a highlighter to line out equipment that your child no longer uses so it is easy to spot current information.

Date: Equipment: Model #: Serial #:

Vendor Name:

Vendor Phone: ____ Rent ____ Own

Financially Responsible Agency:

Other Information:


Vendor Name:



Other Information:


Vendor Name:



Other Information:


Vendor Name:



Other Information:


Vendor Name:



Other Information:


Vendor Name:



Other Information:


Vendor Name:



Other Information:


Vendor Name:



Other Information:

How do I properly dispose of unused medications?

Managing unused medications is a safety as a well as an environmental concern. Clean out your medicine cabinet to prevent accidental ingestion by children or pets and abuse or misuse. Proper disposal will prevent medications from entering soil and groundwater.

The FDA encourages you to consider the following guidelines when disposing of medications:

Follow any specific disposal instructions on the

drug label or patient information that

accompanies the medication. Do not flush

prescription drugs down the toilet unless this

information specifically instructs you to do so.

Take advantage of community drug take-back programs that allow the public to

bring unused drugs to a central location for proper disposal. Call your city or

county government’s household trash and recycling service (see blue pages in

phone book) to see if a take-back program is available in your community. The

Drug Enforcement Administration, working with state and local law enforcement

agencies, is sponsoring National Prescription Drug Take Back Days

(www.deadiversion.usdoj.gov) throughout the United States.

If no instructions are given on the drug label & no take-back program is available

in your area:

Throw the drugs in the household trash, but first:

Take them out of their original containers. Mix drugs with an undesirable

substance, such as used coffee grounds or kitty litter, so medication is

less appealing to children and pets, and unrecognizable to people who

may intentionally go through your trash.

Put them in a sealable bag, empty can, or other container to prevent the

medication from leaking or breaking out of a garbage bag.

Before throwing out a medicine container, scratch out all identifying

information on the prescription label to make it unreadable. This will help

protect your identity and the privacy of your personal health information.

Do not give medications to friends. Doctors prescribe drugs based on a person’s

specific symptoms & medical history. A drug that works for you could be

dangerous for someone else.

When in doubt about proper disposal, talk to your pharmacist.

FDA Consumer Heal t h Informat ion / U. S. Food and Drug Adminis t r at ion APRIL 2011

Safeguarding prescription medicine properly is easy once you know what to do, and it’s important for the health and safety of your family and others who come into your home.

If medicine is not stored properly, there can be serious consequences:

The medicine may get into the wrong hands if a family member or visitor takes it without your knowledge. They may use it incorrectly to try to treat a medical condition — or worse, they may abuse it.

Heat, humidity, or changes in temperature may damage the medicine.

Children or pets may be accidentally poisoned by ingesting easily accessible medicine.

If you have prescription medicine in your home, it is your responsibility to properly safeguard and dispose of it. Here are some general rules to follow:

The Do’s and Don’ts of Safe Medicine Storage

DO ask your community pharmacist if any of the medicine you have been prescribed may have the potential for abuse.

DO lock up medicine that is at risk for being abused in a cabinet, drawer, or medicine safe.

DO keep medicine in a cool, dry place that is out of the reach of children.

DO store medicine in its original container — the label on the bottle provides important information about the medicine. DO keep an updated list of all prescription medicine in your home. Take an inventory at least twice a year — when clocks ‘spring’ forward in the spring and ‘fall’ back in autumn, for example. You can download a medication inventory sheet at: http://www.safeguardmymeds.org/downloads/SafeguardMyMeds-MedicineInventorySheet.pdf

DO talk to your community pharmacist about how to properly dispose of unused or unwanted medicine. Additionally, you can access disposal information online at www.fda.gov by searching for “Rx drug disposal.”

DON’T leave medicine in places that are easily accessible to children or pets.

DON’T store medicine in a bathroom medicine cabinet where humidity and temperature changes can cause damage.1

DON’T share prescription medicine. Healthcare professionals prescribe specific medicine for individuals based on personal medical histories and other health factors. A medicine that works for one person may cause harm — even death — to someone else, even if symptoms are similar.

DON’T take medicine in front of children who often mimic adults. Getting Rid of Unused or Unwanted Prescription Medicine It is important to get rid of medicine that has expired or is no longer needed. There is no set rule for disposing of all medicine, so talk to your community pharmacist about the best way to get rid of unused or unwanted medicine in your home. You can also visit the Food and Drug Administration’s website at www.fda.gov and search for “Rx drug disposal.” Safeguard My Meds - http://www.safeguardmymeds.org/ offers several tools to help you take responsibility for your prescription medicine.

http://www.safeguardmymeds.org/downloads/SafeguardMyMeds-MedicineInventorySheet.pdf

http://www.safeguardmymeds.org/downloads/SafeguardMyMeds-MedicineInventorySheet.pdf

http://www.fda.gov/

http://www.fda.gov/

http://www.safeguardmymeds.org/

Community Alternatives Program for Children

(CAP/C)

What is CAP/C?

The Community Alternatives Program for Children (CAP/C) provides home and community based

services to medically fragile children who, because of their medical needs are at risk for

institutionalization in a nursing home. Examples of children who may be eligible for CAP/C include

children with ventilators, tracheostomies, feeding tubes, severe seizures, and those children who need

help with activities such as bathing, dressing, grooming, and toileting when the child, for medical

reasons, is not able to do or learn to do those tasks independently.

What does CAP/C cover?

In addition to case management and in-home nursing or aide care, families may also receive some

additional services. These include:

respite care (in-home or institutional nursing care provided in order to give the child’s caregiver

some leisure time)

home modifications (related to accessibility)

vehicle modifications- (related to wheelchair accessibility)

Children on CAP/C also have access to regular Medicaid services, for example; physical therapy,

occupational therapy, speech therapy, and medical equipment.

Who is eligible?

CAP/C is available to any child under 22 years of age who meets both the Medicaid eligibility

criteria and the CAP/C criteria. The Medicaid criteria for CAP programs are not the same as the

regular Medicaid criteria. Other criteria include that the child must live in a private residence, must

be able to be cared for safely at home and meet minimum nursing facility level of care.

Who can you contact? For all other NC counties contact the Division of Medical Assistance (DMA) for the agency who provides CAP/C services in that county. (919) 855-4380. Parent Handbook can be found at http://www.ncdhhs.gov/dma/capc/capcparenthandbook.pdf Referral forms can be found at http://www.ncdhhs.gov/dma/forms/CAPC_referral.doc

NOTES TO TAKE TO THE DOCTOR

This is a form to help you prepare for upcoming visits with your child’s doctor (health care provider) and to keep notes about the appointment.

Date of Appointment:

Provider’s Name: Phone:

BEFORE THE VISIT

Issues or concerns to discuss with doctor:

What do you hope will happen at this appointment?

Follow-up tests / appointments:

Referrals required or forms to be signed:

Information / records to take to doctor:

La

st na

me:

Emergency Information Form for Children With Special Needs

Date form

completed

By Whom

Revised Initials

Revised Initials

Name: Birth date: Nickname:

Home Address: Home/Work Phone:

Parent/Guardian:

Emergency Contact Names & Relationship:

Signature/Consent*:

Primary Language:

Phone Number(s):

Physicians:

Primary care physician:

Emergency Phone:

Fax:

Current Specialty physician:

Specialty:

Emergency Phone:

Fax:

Current Specialty physician:

Specialty:

Emergency Phone:

Fax:

Anticipated Primary ED: Pharmacy:

Anticipated Tertiary Care Center:

Diagnoses/Past Procedures/Physical Exam:

1 .

Baseline physical findings:

2.

3.

Baseline vital signs:

4.

Synopsis:

Baseline neurological status:

La

st na

me:

Diagnoses/Past Procedures/Physical Exam continued:

Medications:

Significant baseline ancillary findings (lab, x-ray, ECG):

1.

2.

3.

4.

Prostheses/Appliances/Advanced Technology Devices:

5.

6.

Management Data:

Allergies: Medications/Foods to be avoided and why:

1.

2.

3.

Procedures to be avoided and why:

1.

2.

3.

Immunizations

Dates Dates

DPT Hep B

OPV Varicella

MMR TB status

HIB Other

Antibiotic prophylaxis: Indication: Medication and dose:

Common Presenting Problems/Findings With Specific Suggested Managements

Problem Suggested Diagnostic Studies Treatment Considerations

Comments on child, family, or other specific medical issues:

Physician/Provider Signature: Print Name:

NOTES TO TAKE TO THE INDIVIDUAL FAMILY SERVICES PLAN (IFSP)

This is a form to help you prepare for the Individualized Family Service Plan (IFSP) meeting. The IFSP is the plan for your child and family’s support plan and services to be provided.

What are your main concerns about your child?

What are your child's strengths?

In order to put together a plan that is tailored to your child, rather than your child's diagnosis, please describe your child.

What is your child's diagnosis or qualifying condition?

Who diagnosed your child?

Who would you like to be at your IFSP?

What support does your family need? What services does your child need?

IFSP ISSUES / RESOLUTION LOG

Date: Who was contacted:

Phone #:

Description of Issue:

Resolution:

NOTES / ISSUES FOR REVIEW AT THE NEXT IFSP MEETING

What happens during the 6 month prior to your child’s 3rd birthday? The information below is a brief outline of what should happen if your child has an IFSP and is growing to age 3.

5-6 Months before your child turns 3 years old:

Your Service Coordinator will schedule a time to meet with you, starting the Transition process.

Present at this meeting will be:

Who: Parent and anyone you would like to invite

Children’s Developmental Services Agency Service Coordinator

What: Discuss what Transition means.

Review IFSP goals if needed.

With your help add a transition goal to the Individual Family Service Plan.

Get your permission to contact the Local Education Agency (LEA) to make a referral and talk

Talk to the Preschool Program. You may also complete a Notification/Referral form if needed.

4-5 Months before your child turns 3 years old: with your permission The Children’s Developmental Services Agency Service Coordinator will send the Notification and Referral form to

Preschool Coordinator providing information about your child. The Preschool Coordinator will begin to plan for

needed assessments.

Evaluations will be scheduled to be completed the following month.

Evaluations will be done during this time, such as: Speech, Motor, Assistive Technology, etc.

3-4 Months before your child turns 3 years old

The Service Coordinator will schedule a meeting to introduce you to the Preschool Coordinator and review any current

assessments and information about your child. Next you will have a referral meeting scheduled were you will have the

choice of what information and assessments will be reviewed by the school. A plan will be developed regarding

specific tasks needed, who will be responsible to do them and when the tasks will be completed. The school will

complete any assessments needed to help determine eligibility for services.

2 Months before your child turns 3 years old: The Preschool Coordinator will invite you to your child’s first Individual Education Plan (IEP) meeting. Remember to

invite who you want to come to the IEP meeting with you and let the preschool coordinator know. You can invite

family, friends, therapist, CDSA Service Coordinator, ect..

1 Month before your child turns 3 years old: The Individual Education Plan meeting will be held at the preschool you choose for your child to attend or location of

your choice.

Who will attend?

Parent Child Service Coordinator

Preschool Coordinator (Local Education Agency)

Regular Education Teacher or private provider

Anyone you feel can support you in this meeting such as family, friends, etc.

You may also want to invite your CDSA Service Coordinator and therapist’s that are working with your child. You

can choose to have a Care Managers through Care Coordination for Children (CC4C) follow your child’s

progress until five years of age. If so, it would be important to invite them to the IEP meeting. Why: The Individual Education Plan is the map for your child’s teachers and therapists who will be serving your child in the

preschool program.

Happy Third Birthday! If your child is found to be eligible for services he/she will now receive services through your local

Preschool program. The Individual Education Plan, (IEP) is now active. Remember that the IEP can be changed if it is

not working for your child! Make a note of who to call if you have questions.

Transition Plan to the Preschool Program

VISION FOR THE FUTURE FORM

Date:

Ideas for the future of my child (social skills, recreational skills, learning their dreams, your dreams, etc.):

Resources to make my child’s dreams come true:

MY CHILD’S IFSP (Insert a copy of your child’s current IFSP)

THE INDIVIDUAL EDUCATION PLAN (IEP) This is a form to help you prepare for the Individualized Education Program (IEP). The term IEP is used to describe the plan for your child's education and the services provided through the school system. The meeting where the plan is created is called an IEP.






Who would you like to be at your IEP?

What type of school setting and support services do you believe your child needs?

IEP ISSUES / RESOLUTION LOG


Phone #:


Resolution:

NOTES / ISSUES FOR REVIEW AT THE NEXT IEP MEETING


Date:

Ideas for the future of my child (social skills, recreational skills, learning their dreams, your dreams, etc.):


My Child’s Individualized Education Plan (IEP) (Insert a copy of your child’s current IEP)

NOTES TO TAKE TO THE INDIVIDUAL

EDUCATION PLAN (IEP)

This is a form to help you prepare for the Individualized Education Program (IEP). The term IEP is used to describe the plan for your child's education and the services provided through the school system. The meeting where the plan is created is called an IEP.






Who would you like to be at your IEP?

What type of school setting and support services do you believe your child needs?

IEP ISSUES / RESOLUTION LOG


Phone #:


Resolution:

NOTES / ISSUES FOR REVIEW AT THE NEXT IEP MEETING

A Quick Summary of Transition

Life is full of transitions, and one of the more remarkable ones occurs when we get ready

to leave high school and go out in the world as young adults. When the student has a

disability, it’s especially helpful to plan ahead for that transition. In fact, IDEA requires it.

Transition services are intended to prepare students to move from the world of

school to the world of adulthood.

Transition planning begins during high school at the latest.

IDEA requires that transition planning start by the time the student reaches age 16.

Transition planning may start earlier (when the student is younger than 16) if the IEP

team decides it would be appropriate to do so.

Transition planning takes place as part of developing the student’s Individualized

Education Program (IEP).

The IEP team (which includes the student and the parents) develops the transition

plan.

The student must be invited to any IEP meeting where postsecondary goals and

transition services needed to reach those goals will be considered.

In transition planning, the IEP team considers areas such as postsecondary education

or vocational training, employment, independent living, and community

participation.

Transition services must be a coordinated set of activities oriented toward producing

results.

Transition services are based on the student’s needs and must take into account his

or her preferences and interests. NICHCY (National Dissemination Center for Children with Disabilities) 2011 http://nichcy.org/

SCHOOL INFORMATION

(KINDERGARTEN THROUGH TRANSITION YEARS)

Preschool School: Address:

Principal:

Principal Phone:

Teacher/ Aide/ Inclusion Specialist:

Teacher/ Aide/ Inclusion Specialist Phone:

ST/PT/OT Name:

ST/PT/OT Phone:

Other:

Preschool School: Address:

Principal:

Principal Phone:



ST/PT/OT Name:

ST/PT/OT Phone:

Other:

Kindergarten School: Address:

Principal: Principal Phone:



ST/PT/OT Name:

ST/PT/OT Phone:

Other:

1st Grade School: Address:




ST/PT/OT Name:

ST/PT/OT Phone:

Other:

2nd Grade School: Address:




ST/PT/OT Name:

ST/PT/OT Phone:

Other:

3rd Grade School: Address:




ST/PT/OT Name:

ST/PT/OT Phone:

Other:

4th Grade School: Address:




ST/PT/OT Name:

ST/PT/OT Phone:

Other:





ST/PT/OT Name:

ST/PT/OT Phone:

Other:





ST/PT/OT Name:

ST/PT/OT Phone:

Other:





ST/PT/OT Name:

ST/PT/OT Phone:

Other:





ST/PT/OT Name:

ST/PT/OT Phone:

Other:





ST/PT/OT Name:

ST/PT/OT Phone:

Other:





ST/PT/OT Name:

ST/PT/OT Phone:

Other:

11th Grade

School: Address:




ST/PT/OT Name:

ST/PT/OT Phone:

Other:

12th Grade

School: Address:




ST/PT/OT Name:

ST/PT/OT Phone:

Other:

Transition Year

School: Address:


Teacher/ Aide/ Inclusion


Specialist Phone:

ST/PT/OT Name:

ST/PT/OT Phone:

Other:

Transition Year

School: Address:




ST/PT/OT Name:

ST/PT/OT Phone:

Other:

Transition Year

School: Address:




ST/PT/OT Name:

ST/PT/OT Phone:

Other:

Transition Year

School: Address:




ST/PT/OT Name:

ST/PT/OT Phone:

Other:

My Child’s Individualized Education Plan (IEP) (Insert a copy of your child’s current IEP. This should include a Transition Plan at the age of 14.

If you do not use an IEP then add your Section 504 and/or Individualized Health Plan (IHP) plan to this section)


Date:

Ideas for the future of my child (Employment, Housing, further education their dreams, your dreams, etc.):


Health Care Coverage for Adults with Disabilities In many states, as soon as a youth becomes 18 years old, the eligibility requirements for health insurance change. As a result many young adults are unable to maintain adequate health care coverage. In fact, lack of adequate insurance is the main reason young adults with disabilities are not able to manage their own health needs. Each state has different rules and regulations that determine age limits, parental continuation of coverage, dependency, and eligibility requirements. It is important to check the laws that govern these policies and determine options that may be possible for your youth, based on their health condition and medical necessity. Best advice? Start early and plan ahead!

Age Restrictions for Private Insurance (North Caroilna) It is important to note that, in the state of North Carolina, health insurance coverage for your child with special health care needs can be maintained even after he or she reaches the age at which dependent child coverage usually terminates, usually age nineteen (19). Your child’s status as a student is not a consideration. In order to qualify for this continual insurance coverage, the child must be incapable of sustaining employment because of mental retardation or physical handicap and must be chiefly dependent on the policyholder (or subscriber) for support and maintenance. The policyholder or subscriber (youth/young adult) must provide proof of incapacity or dependency as required by the insured (but not more frequently than annually) after the child has reached the age limit. If you need to reference this information, it can be found under N.C. General Statue 58:51:255.

Adapted from: Carolina Health and Transition: Health Care Transition – A Parent, Family and Caregiver’s Guide. The North Carolina Division of Public Health, Women and Children’s Health Section, Children & Youth Branch, publication 2009.

Public & Private Insurance Plans: Understanding the Options for

YSCHCN

http://www.hrtw.org/healthcare/hlth_ins.html

Here is what we know:

NO HEALTH INSURANCE - Two out of five college graduates and one-half of high school

graduates who do not go on to college will experience a time without health insurance in the first

year after graduation. (Commonwealth Fund 2003)

DROPPED FROM HEALTH INSURANCE - Young adults are often dropped from their parents

policies or public insurance programs at age 19, or when they graduate from college and struggle

to find jobs with health benefits. Young adults are far more likely to be uninsured than older

adults: four of 10 young adults between the ages of 19 and 29 can expect to be uninsured at

sometime during the year--twice the rate of adults ages 30 to 64. (Commonwealth Fund 2003)

BARRIERS TO GETTING AND KEEPING HEALTH INSURANCE - “Americans with disabilities

face a number of distinct barriers in obtaining, maintaining, and using health insurance and in

accessing and using health care services. At the same time, Americans with disabilities also

confront the barriers, problems, and frustrations with which most Americans routinely struggle in

the insurance and health care systems." (National Council on Disability 2002 annual National Disability Policy: A Progress Report)

PUBLIC HEALTH INSURANCE: Changes after reaching majority age

MAINTAIN MEDICAID - Passed SSI Redetermination - continue benefits

- Emancipated Minor - by marriage or court decision may qualify or continue Medicaid due to income

or disability status.

DROP FROM MEDICAID

- Former childhood SSI recipient at age 18 did not qualify under SSI redetermination and loses

benefits (income too high or does not meet disability criteria.)

NOT APPROVED - SECTION 301: PROVISION TO CONTINUE RECEIVING SSI BENEFITS

- Individuals found ineligible during SSI redetermination may continue to receive SSI benefits

IF they began receiving state vocational rehabilitation agency services before their 18th birthday.

- Section 301 allows the young adult to retain benefits (SSI & Medicaid) while he/she participates in

approved vocational rehabilitation program. Http://policy.ssa.gov/poms.nsf/lnx/0412515001

NEW to MEDICAID - Child did not qualify for SSI under 18 due to family income.

- At age 18 may qualify for SSI and Medicaid as an adult single head of household.

NOTE: “209B States,” require separate application to Medicaid, not linked to SSI.

11 States have elected to have at least one more stringent requirement than the SSI rules for Medicaid eligibility: CT, HI, IN, IL, MN, MO, ND, NH, OK, OH, and VA.

http://www.hrtw.org/healthcare/hlth_ins.html

http://policy.ssa.gov/poms.nsf/lnx/0412515001

PUBLIC HEALTH INSURANCE: Continued Medicaid Eligibility

MEDICAID BUY-IN WHILE WORKING: Section 1619(b)

- Still meets SSI criteria,

- Needs Medicaid in order to work; and

- Gross earned income is insufficient to pay for other supports

TICKET TO WORK

- Worker could opt to buy-in and receive Medicaid benefits

- Program is too new to assess if states are providing full benefit packages and at what level of

sliding fee

CREATIVE – MaineCare for Childless Adults

- Meets low income eligibility

- Plan pays insurance premiums for those who meet certain criteria

- Plan uses employer-sponsored insurance for the expansion

PRIVATE HEALTH INSURANCE: Continued Benefits via Family Plan

ADULT DISABLED DEPENDENT CHILD

- Youth over 18 may continue on family plan if dependent for life.

- Must be on the family plan prior to turning 18. (Legal Statute: 40 states)

- No substantial gainful employment

- Annual re-certification - disability & dependent

STUDENT STATUS

- Proof of college class load each semester (often requires full-time status)

- Ages 18-22, sometimes older

- Annual re-certification

PRIVATE HEALTH INSURANCE: Young Adult Pays Premium

OPTIONS to buy private insurance health care benefits:

College - student plan

Employed - group plan

Self-pay: single plan

Ticket to Work (Medicaid Buy-in)

COBRA

State High Risk Pools

Concern: What happens if health status changes and affects continuous employment or attending

school? There is no safety-net or easy on/off for health care benefits.

Tip Sheet Developed by: Patti Hackett & Glen Gallivan, Ocala, FL

The HRTW National Center www.hrtw.org enjoys a working partnership with the Shriners Hospitals for Children and KASA. The National Center

is funded through a cooperative agreement (U93MC00047) from the Integrated Services Branch, Division of Services for Children with Special

Health Needs (DSCSHN) in the Federal Maternal and Child Health Bureau (MCHB), Health Resources and Services Administration (HRSA),

Department of Health and Human Services (DHHS). HRSA/MCHB Project Officer: Monique Fountain, MD.

HRTW Phase II Projects are currently active in Arizona, Iowa, Maine, Mississippi, and Wisconsin.

The opinions expressed herein do not necessarily reflect the policy or position nor imply official endorsement of the funding agency

or working partnerships.

http://www.hrtw.org/

Transitions – Changing Role for Youth

Health & Wellness 101 The Basics

Yes I do this

I want to do this

I need to learn how

Some else will have to do this – Who?

1. I understand my health care needs, and disability and can explain my needs to others.

2. I can explain to others how our family’s customs and beliefs might affect health care decisions and medical treatments.

3. I carry my health insurance card every day.

4. I know my health and wellness baseline (pulse, respiration rate, elimination habits).

5. I track my own appointments and prescription refills’ expiration dates.

6. I call for my own doctor appointments.

7. Before a doctor’s appointment, I prepare written questions to ask.

8. I know I have an option to see my doctor by myself.

9. I call in my own prescriptions.

10. I carry my important health information with me every day (i.e.: medical summary, including medical diagnosis, list of medications, allergy info., doctor’s numbers, drug store number, etc.).

11. I have a part in filing my medical records and receipts at home.

12. I pay my co-pays for medical visits.

13. I co-sign the “permission for medical treatment” form (with or without signature stamp, or can direct others to do so).

14. I know my symptoms that need quick medical attention.

15. I know what to do in case I have a medical emergency.

16. I help monitor my medical equipment so it’s in good working condition (daily and routine maintenance).

17. My family and I have a plan so I can keep my healthcare insurance after I turn 18.

Transitions – Changing Role for Families

Health & Wellness 101 The Basics

Yes I my child/youth can do this

I want my child/youth to do this

I need to learn how to teach my child / youth

Some else will have to do this for my child / youth– Who?

1. My child/youth understands his/her health care needs and disability and can explain needs to others.

2. My child/youth can explain to others how our family’s customs and beliefs might affect health care decisions and medical treatments.

3. My child/youth carries his/her health insurance card with her.

4. My child/youth knows his/her health and wellness baseline (pulse, respiration rate, elimination habits).

5. My child/youth tracks appointments and prescription refills expiration dates.

6. My child/youth calls to make his/her own doctor appointments.

7. Before a doctor’s appointment, my child/youth prepares written questions to ask.

8. My child/youth is prepared to see the doctor by him/her self.

9. My child/youth calls in their own prescriptions.

10. My child/youth carries his/her important health information every day (i.e.: medical summary, including medical diagnosis, list of medications, allergy info., doctor’s numbers, drug store number, etc.).

11. My child/youth helps file medical records and receipts at home..

12. My child/youth pays co-pays for his/her medical visits. 13. My child/youth co-signs the “permission for medical

treatment” form (with or without signature stamp, or can direct others to do so).

14. My child/youth knows his/her symptoms that need quick medical attention.

15. My child/youth knows what to do in case they have a medical emergency.

16. My child/youth knows how to monitor medical equipment so it’s in good working condition (daily and routine maintenance).

17. My child/youth and I have discussed a plan to be able to continue healthcare insurance after they turn 18.

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TRANSITION ACTION CARE PLAN Child’s Youth’s Name: ______________________ D.O.B.__________ Patient#________ Parents /guardians: ____________________ Primary Diagnosis: _________________________ Secondary Diagnosis: _______________________ Phone# __________________

Main Concerns Related Current

Information Current Plans/Interventions Person(s)

Responsible Date – Initials

Review Date

Topics to Review

Health Promotion

Health Condition Management

Health Insurance

Functional Independence

High School Goals/Plans

Post secondary plans

Work Plans

Independent Living Issues

Community Inclusion

Adult Heath Care Transition (Insert copies of Transition Plan)

Our work is guided by professional ethics and values that are designed to safeguard your privacy and confidentiality.

If you have any concerns about how you have been treated, contact your worker’s supervisor. If you are unsure who to contact, please call the Director’s office at (828) 250-5587.

“In accordance with Federal law and U.S. Department of Agriculture (USDA) and U.S. Department of Health and Human Services (HHS) policy, this institution is prohibited from discriminating on the basis of race, color, national origin, sex, age, or disability. Under the Food Stamp Act and USDA policy, discrimination is prohibited also on the basis of religion or political beliefs.

To file a complaint of discrimi9ntation, contact USDA or HHS. Write USDA, Director, Office of Civil Rights, 1400 Independence Avenue, S.W., Washington, D.C. 20250-9410 or call (800) 795-3272 (voice) or (202) 720-6382 (TTY). Write HHS, Director, Office for Civil Rights, Room 506-F, 200 Independence Avenue, S.W., Washington, D.C. 20201 or call (202) 619-0403 (voice) or (202) 619-3257 (TTY). USDA and HHS are equal opportunity providers and employers.”

Interpreter services are

available at no cost.

Any problems getting interpreter help or

getting services through an interpreter,

please call Lisa Eby, Title VI

Compliance Officer at 250-5610.

Wage Verification (check stubs, a statement from youremployer, self employmentrecords if applicable)

Proof of Residency(drivers license, lease,mortgage or utility bill withcurrent address, school or daycare records)

Unpaid Medical bills

Verification of Pregnancy (if applicable)

While these items may be necessary to process your application, they are note required at the time of your request for services. Additional information may be requested by your worker.

more ways

Medicaid for Families Provides medical assistance for parents and/ or certain relatives with children under age 19 in the home and coverage for individuals under age 21

Medicaid for Infants & Children

NC Health Choice

Family Planning Waiver

Breast & Cervical Cancer Medicaid

When you call the application line:

A DSS worker will help you fillout the application

DSS will then mail you the filledout application.

To complete the application, youmust sign it and return it in aprepaid envelope.

We can’t process your application until we get it back with your signature. The application date is the date the signed application is received

Provides medical assistance for children under age 19.

If your children are not eligible for Medicaid, they may be eligible for Health Choice, a free and low cost health insurance plan for children under 19 years of age

A limited program for men age 19-65 and women age 19-55 for family planning services only.

Provides medical assistance for women enrolled, screened and diagnosed with breast or cervical cancer.

8am-5pm

HS 339 New Leicester Highway

Suite 110 Asheville, NC 28806

or

Health & Human Services

40 Coxe Avenue Asheville, NC 28802

What you Should Know Before you Apply for

SSI Disability Benefits for a Child

Children from birth up to age 18 may get Supplemental Security Income (SSI)

benefits. They must be disabled and they must have little or no income and

resources. Here are answers to some questions people ask about applying for SSI

for children.

How does Social Security decide if a child is disabled?

How can I get ready for the disability interview?

How does Social Security decide if a child can get SSI?

How will I know what Social Security has decided?

Will my personal information be kept safe?

What if I am more comfortable speaking in a language other than English?

Social Security has a strict definition of disability for children.

The child must have a physical or mental condition(s) that very seriously limits his or her activities; and

The condition(s) must have lasted, or be expected to last, at least 1 year or result in death.

A state agency makes the disability decision. They review the information you give us. They will also ask

for information from medical and school sources and other people who know about the child.

If the state agency needs more information, they will arrange an examination or rest for the child, which we

will pay for.

Review the disability starter kit. It includes a checklist and a worksheet to help you gather the information

you need. Have this information with you at the time of the interview.

If you have access to the Internet, you can complete an online Child Disability Report at

www.socialsecurity.gov/childdisabilityreport.

For more information, visit our website at www.socialsecurity.gov/disability/ or call toll-free 1-800-772-

1213 (for the deaf or hard of hearing, call TTY 1-800-325-0778).

Children can get SSI if they meet Social Security’s definition of disability for children and if they have little or

no income and resources. We also consider the family’s household income, resources and other personal

information.

We will send you a letter. It can take 3 to 5 months to decide a child’s SSI disability claim. Let us know if your

address or telephone number changes so that we can get in touch with you.

Yes. Social Security protects the privacy of those we serve. As a federal agency, we are required by the

Privacy Act of 1974 *5U.S.C. 522a) to protect the information we get from you.

We provide free interpreter services to help you conduct your Social Security business.

What You Should Know Before You Apply for SSI Disability Benefits for a Child

Other Important Information

Medicaid

State Children’s Health Insurance Program (SCHIP)

Other Health Care Services

Work Opportunities for Young People Who Are Getting SSI

SSI is not a medical assistance program. Your state Medicaid agency, local health department, social services

office or hospital can find your nearest health care agencies. Your Social Security office can also help you find

health care agencies.

Medicaid is a health care program for people with low incomes and limited resources. In most states, children

who get SSI benefits can also get Medicaid. Even if the child cannot get SSI, he or she may be able to get

Medicaid. Your state Medicaid agency, Social Security office or your state or county social services office can

give you more information..

Children may be capable to get health insurance from SCHIP even if they do not get SSI. SCHIP provides

health insurance to children from working families with incomes too high to get Medicaid, but who cannot

afford private health insurance. SCHIP provides insurance for prescription drugs and for vision, hearing and

mental health services in all 50 states and the District of Columbia. Your state Medicaid agency can provide

more information about SCHIP. You can also go to www.insurekidsnow.gov/ or call toll free 1-877-KIDS-

NOW (1-877-543-7669) for more information on your state’s program.

If the child is under age 16 and we decide he or she is disabled and can get SSI, we will refer him or her to your

state children’s agencies for social, developmental, educational and medical services. Even if the child cannot

get SSI, these state agencies may be able to help him or her.

Many young people who get SSI disability benefits want to work. The following information may be helpful.

We do not count most of a child’s earnings when we future the SSI payment. We count even less of a

child’s earnings if the child is a student.

We subtract the cost of certain items and services that a child needs to work from his or her earnings in

figuring the SSI payment.

If a child is age 15 or older, he or she can establish a Plan to Achieve Self-Support (PASS). With a PASS, a

child can set aside income for a work goal. We will not count the income when we figure the SSI payment.

A child’s Medicaid coverage can continue even if his or her earnings are high enough to stop SSI payment,

as long as the earnings are under a certain amount.

Social Security has two programs that can assist young people who get SSI disability benefits and want to go to

work:

Benefits Planning, Assistance and Outreach (BPAO) program, and

Protection and Advocacy for Beneficiaries of Social Security (PABSS) program

Your local Social Security office can provide more information about these programs. You can also find more

information on our Work website, www.socialsecurity.gov/work/.

04/01/08

NC Family to Family Health Information Center

“A beacon for families of children with special health care needs.”

NC Family to Family Health Information Center

ECAC 907 Barra Row, Suites 102/103

Davidson, NC 28036 Phone: (704) 892-1321

Fax: (704) 892-5028 Parent Information Line: 1-800-962-6817

[email protected] www.ecac-parentcenter.org

Fact Sheet

18

Prescriptions Assistance Programs

The cost of medication can be a heavy financial burden even with insurance benefits. A number of the major pharmaceutical companies provide some type of patient assistance programs to assist with the cost of medication.

Start by asking your physician’s office for help. Most medical offices have at least one person on staff that can help you determine if the pharmaceutical company that manufactures your medication has an assistance program. If there is a formal program in place, your physician’s office would then need to initiate the sometimes lengthy paperwork process. Most patient assistance programs have

very strict income guidelines and, often, insurance coverage would affect eligibility.

Should you want to investigate patient assistance programs on your own, begin by researching the manufacturer of your medication. If you take a generic brand, find out the brand name that your medication is replacing. To obtain the name of the manufacturer, you could ask you pharmacist or search online. By searching online, you can usually obtain the other pertinent information such as

the toll free telephone number, address, and often the actual patient assistance application.

The application, usually just financial information, must be completed by the patient and proof of income (such as tax records) may be required. The application is then given to your doctor for completion. There is a section on the application asking for the name of the medication you need assistance with, the strength, and the quantity. You should leave this important section for the physician to complete. A written prescription must usually be attached to the application and it can all be mailed by your physician when completed.

The notification of acceptance or denial in most patient assistance programs is usually handled

by mail. Either you or your physician should receive this notice. If you don’t hear anything for several weeks– keep calling!

Upon acceptance into an assistance program, it is at the discretion of the manufacturer how much medication they will send and how frequently. They will also let you know how often you will need to fill out the application again. The medication itself may be mailed to your home or it may be mailed to your physician’s office. It is important to establish a relationship with the person in your physician’s office that handles the patient assistance programs so that your medication will not end

up in the general sample medication area.

Should your application for assistance be denied, there is still hope for help with medication costs! The majority of physician offices have a “samples” closet. Drug manufacturing representatives or “drug reps” frequently visit physicians to give them details about their products. In exchange for a signature, your physician will receive free medication samples that can be used as the physician

3/26/2008.

The Family to Family Health Information Center is a Program of The Exceptional Children’s Assistance Center (ECAC) and is affiliated with Family Voices of North Carolina. This fact sheet was developed with funding from the U.S.

Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau, Division of Services for Children with Special Health Needs. The NC Family to Family Health Information

Center operates under the auspices of grant # H84MC08000.

mailto:[email protected]

mailto:[email protected]

http://www.ecac-parentcenter.org/

04/01/08

Prescription Assistance Programs Fact Sheet

18

Make sure your doctor knows that you need help with your medication. Each time you visit, ask if they have samples of the medications you are on. Do not be shy about asking for them. If you do not ask, the next patient will! If they happen not to have any of the medications you are on, obtain permission to call another time. You may want to ask for a contact name so you will not have to leave a message for your physician when you call back.

Should your physician want to start you on a new prescription and there are no samples available, ask for two prescriptions! The first prescription should be a small quantity to make sure you can tolerate the medication before you invest a great deal of money. The second prescription should be for the regular amount of medicine. If the new prescription is called in by telephone and you do not have the opportunity to ask for two prescriptions, talk to your pharmacist about only purchasing a small amount initially.

There are several ways to obtain help with the cost of medication. Investigate your options!

Make the necessary phone calls. Complete the paperwork and do the follow up. Two programs that are available include Together Rx Access and Partnership for Prescription

Assistance. Together Rx Access is a prescription savings program that ten pharmaceutical companies founded together. This service is free and could save you from 25-40% on both brand name and generic medication. There is no fee and only three eligibility requirements:

1. No prescription drug coverage2. Not eligible for Medicare

and 3. Legal resident of the US or Puerto RicoFor information about this program, call 1-800-444-4106 or visit their website at www.togetherrxaccess.com/apply.html .

The Partnership for Prescription Assistance is a single point of access to more than 475 public and private patient assistance programs. More than 180 of the programs are offered by pharmaceutical companies. Even if you have prescription insurance coverage, you may be eligible for some type of help. To contact PPA call 1-888-4PPA-NOW or 1-888-477-2669 or online at www.pparx.org .

Use the following website to see a list of most of the major pharmaceutical companies:

www.ispex.ca/companies/diapharm.html .Simply click on the manufacturer of your medication and you will be re-directed to their website.

Use the attached checklist to help get your medication cost under control!

http://www.togetherrxaccess.com/apply.html

http://www.pparx.org/

http://www.ispex.ca/companies/diapharm.html

Legal Health Issues Fact Sheet

Medical Power of Attorney

A Medical Power of Attorney is a document, signed by a competent adult;

designating a person that she/he trusts to make health care decisions on their

behalf should they become unable to make such decisions. We have provided a

sample document in the Appendix for your review. Check the following websites

for more information: www.legalhelpmate.com/power-of-attorney.aspx;

www.expertlaw.com/library/estate_planning/power_of_attorney.html.

Health Insurance Portability and Accountability Act (HIPAA)

HIPAA is a federal law that covers both the privacy of your youth’s medical

information as well as issues related to the transfer and continuation of health

insurance coverage. We have included a fact sheet in the Toolkit for your

review. For more information check the US Department of Health and Human

Services website at www.hhs.gov/ocr/hipaa.

Family Educational Rights and Privacy Act (FERPA)

FERPA is another federal law that deals with access to educational records, as

well as health records held at educational institutions. Please review the fact

sheet in the Appendix. A brochure for parents can be found on the US

Department of Education website:

www.ed.gov/policy/gen/guid/fpco/brochures/parents.pdf.

Guardianship

There are many factors to consider when deciding guardianship. A guardianship

is the legal proceeding by which a capable adult (e.g. agent) can be appointed

to manage the personal or financial affairs of an individual who is unable to do

so on his or her own. As a parent, the best resource for obtaining more

information is to visit the NC Guardianship Association at www.nc-guardian.org.

Adapted from: Carolina Health and Transition: Health Care Transition A Parent, Family and

Caregiver’s Guide. The North Carolina Division of Public Health Section, Children & Youth

Branch, publication 2009

Medical Power of Attorney Effective Upon Execution I, [NAME], a resident of [ADDRESS. COUNTY,STATE]; Social Security Number [NUMBER] designate NAME], presently residing at [ADDRESS], telephone number [PHONE NUMBER] as my agent to make any and all health care decisions for me, except to the extent I state otherwise in this document. For the purposes of this document, "health care decision" means consent, refusal of consent, or withdrawal of consent to any care, treatment, service, or procedure to maintain, diagnose, or treat an individual's physical or mental condition. This medical power of attorney takes effect if I become unable to make my own health care decisions and this fact is certified in writing by my physician. Limitations: [Describe any desired limitations, for example, concerning life support, life-prolonging care, treatment, services, and procedures.] Inspection and Disclosure of Information Relating to My Physical or Mental Health: Subject to any limitations in this document, my agent has the power and authority to do all of the following:

1. Request, review, and receive any information, verbal or written, regarding my physical or mental health, including, but not limited to, medical and hospital records;

2. Execute on my behalf any releases or other documents that may be required in order to obtain this information;

3. Consent to the disclosure of this information. Additional Powers: Where necessary to implement the health care decisions that my agent is authorized by this document to make, my agent has the power and authority to execute on my behalf all of the following:

1. Documents titled or purporting to be a "Refusal to Permit Treatment" and "Leaving Hospital Against Medical Advice";

2. Any necessary waiver or release from liability required by a hospital or physician.

Duration: This power of attorney exists indefinitely from its date of execution, unless I establish herein a shorter time or revoke the power of attorney. [If applicable: This power of attorney expires on [DATE]. If I am unable to make health care decisions for myself when this power of attorney expires, the authority I

have granted my agent shall continue to exist until such time as I become able to make health care decisions for myself.] Alternative Agent: In the event that my designated agent becomes unable, unwilling, or ineligible to serve, I hereby designate [NAME], presently residing at [ADDRESS], telephone number [PHONE NUMBER] as my as my first alternate agent, and [NAME], presently residing at [ADDRESS], telephone number [PHONE NUMBER]as my as my second alternate agent. Prior Designations Revoked: I revoke any prior Medical Power of Attorney. Location of Documents: The original copy of this Medical Power of Attorney is located at [Location]. Signed copies of this Medical Power of Attorney have been filed with the following individuals and institutions: [Names and Addresses]. I sign my name to this Medical Power of attorney on the date of [DATE], at [ADDRESS, COUNTY, STATE]. ___________________________________________________________ [NAME]

Statement of Witnesses

I hereby declare under penalty of perjury that the person who signed or acknowledged this document is personally known to me (or proved to me on the basis of convincing evidence) to be the principal, that the principal signed or acknowledged this durable medical power of attorney in my presence, that the principal appears to be of sound mind and under no duress, fraud, or undue influence. I am not the person appointed an agent by this document. I am not related to the principal by blood, marriage, or adoption. I would not be entitled to any portion of the principal's estate on the principal's death. I am not the attending physician of the principal or an employee of the attending physician. I have no claim against any portion of the principal's estate on the principal's death. Furthermore, if I am an employee of a health care facility in which the principal is a patient, I am not involved in providing direct patient care to the principal and am not an officer, director, partner, or business office employee of the health care facility or of any parent organization of the health care facility. _______________________________ _______________________________ [WITNESS] [WITNESS] Subscribed and sworn to before me on [DATE].

Notary Public, [COUNTY, STATE]

My commission expires ______________.

LEGAL PAPERS

(Insert copies of important legal papers, such as: Custody, guardianship, or advanced directives forms.)

ALPHABET SOUP ACRONYM INDEX

The following index lists acronyms used by professionals who work with families. ADA Americans with Disabilities Act

ADD Attention Deficit Disorder

ADHD Attention Deficit Hyperactivity Disorder

AIDS Acquired Immune Deficiency Syndrome

ARC The ARC: Advocates for the Rights of Citizens with Developmental Disabilities and their Families

ARNP Advanced Registered Nurse Practitioner

BIA Bureau of Indian Affairs

BD Behaviorally Disabled

CAP-C Community Alternatives Program for Children

CAP-MR/DD Community Alternatives Program for Mentally Retarded/Developmentally Disabled Individuals

CD Communication Disorders

CDS Communication Disorders Specialist

CFR Code of Federal Regulations

CHDD Center on Human Development and Disability at the University of Washington

CHRMC Children’s Hospital and Regional Medical Center

CP Cerebral Palsy

CPS Child Protective Services

CSHCN Children with Special Health Care Needs

CSO Community Service Office, DSHS

DCFS Division of Children and Family Services

DD Developmentally Disabled

DDD Division of Developmental Disabilities, DSHS

DDPC Developmental Disabilities Planning Council

DH Developmentally Handicapped

DMH Division of Mental Health

DOH Department of Health

DSB Department of Services for the Blind

DSHS Department of Social and Health Services

DVR Division of Vocational Rehabilitation

ECDAW Early Childhood Development Association of Washington

ECEAP Early Childhood Education and Assistance Program

ED Emotionally Disturbed

EEG Electroencephalogram

EEU Experimental Education Unit, CHDD

EFMP Exceptional Family Member Program (helps military families locate to areas with services)

EKG Electrocardiogram

EPSDT Early Periodic Screening, Diagnosis, and Treatment

ESD Educational Service District

FAPE Free Appropriate Public Education

FRC Family Resources Coordinator

HHS Health and Human Services

HI Health Impaired or Hearing Impaired

HMO Health Maintenance Organization

HO Healthy Options, DSHS, Medicaid Managed Care Program

HOH Hard of Hearing

ICC Interagency Coordinating Council; county ICC and state ICC.

IDD Intellectual Developmentally Disability

IDEA Individuals with Disabilities Education Act

IEP Individual Education Plan

IFSP Individual Family Service Plan

I & R Information and Referral

ISP Individual Service Plan

LD Learning Disabled

LDA Learning Disabilities Association

LEA Local Education Agency

LICWAC Local Indian Child Welfare Advocacy Board

LRE Least Restrictive Environment

MCH Maternal and Child Health

MD Medical Doctor

MDT Multi-Disciplinary Team

MH Multiply Handicapped

MR Mentally Retarded

MR/DD Mentally Retarded/Developmentally Disabled Individuals

MS Multiple Sclerosis

NICU Neonatal Intensive Care Unit

NORD National Association of Rare Disorders

OCR Office of Civil Rights

OFM Office of Financial Management

OI Orthopedically Impaired

OSEP Office of Special Education Programs

OSERS Office of Special Education and Rehabilitation Services

OSPI Office of Superintendent of Public Instruction

OT Occupational Therapy/Therapist

OTR Licensed and Registered Occupational Therapist

PAVE Parents Are Vital in Education

P & A Protection and Advocacy

PHN Public Health Nurse

PL Public Law

PT Physical Therapy/Therapist

PTA Parent Teacher Association

RCW Revised Code of Washington (state law)

RN Registered Nurse

RPT Registered Physical Therapist

SBD Seriously Behaviorally Disabled

SEA State Education Agency

SEAC Special Education Advisory Council

SEPAC Special Education Parent/Professional Advisory Council

SLD Specific Learning Disability

SSA Social Security Administration

SSI Social Security Income

STOMP Specialized Training of Military Parents

SW Social Work/Worker

TANF Temporary Assistance to Needy Families

TAPP Technical Assistance for Parents and Professionals

TASH The Association for Persons with Severe Handicaps

TBI Traumatic Brain Injury

TDD Telecommunication Device for the Deaf

TRICARE U.S. Department of Defense Health Care System

TTY Telecommunication Device for Deaf, Hearing Impaired, and Speech Impaired Persons

VI Visually Impaired

WAC Washington Administrative Code

WACD Washington Association for Citizens with Disabilities

WIC Women, Infants and Children Supplemental Food Program

WSMC Washington State Migrant Council

WSSB Washington State School for the Blind

This list was adapted from and used with permission of PAVE.

HELPFUL WEBSITES

Local Resources

Asheville City Schools www.ashevillecityschools.net Buncombe County Schools www.buncombe.k12.nc.us Henderson County Schools www.henderson.k12.nc.us/ Madison County Schools www.madisonk12.net/ Transylvania County Schools www.transylvania.k12.nc.us/ www.ecac-parentcenter.org/education/health.htm NC Family to Family Health Information Center (HIC): A state-wide resource providing health information and support to families with children who have special health care needs. Materials also available about transitioning from pediatric to adult health care. http://www.missionchildrens.org/family-support-network.php Offering Parent-to-parent support, educational resources through workshops, family support groups, information packets, lending library, parent speaking panels, sibling workshops social events and much more. Serving Buncombe, Henderson, Madison and Transylvania Co. www.FIRSTwnc.org A community benefit organization providing information, education, support and advocacy to persons with disabilities, their family and the community. http://vayahealth.com/ Vaya Health is a regional organization that coordinates high quality prevention, treatment, and support services for individuals and families in our communities with developmental disabilities, mental health, or, substance abuse needs. Vaya Health is responsible for managing, coordinating, facilitating and monitoring the provision of mental health, developmental disabilities and substance abuse services in the catchment area they serve. www.Buncombecountychildrencollabortive.org Promotes public awareness, advocacy and the collaboration of agencies, families and the community. We strengthen services by addressing gaps and barriers for at-risk children and their families. http://www.fifnc.org First In Families of North Carolina provide family support for families or individuals experiencing developmental disability or traumatic brain injury across NC. FIFNC Lifeline project could provide needed financial support to a family in need if the family meets the requirements for eligibility.

http://www.ashevillecityschools.net/

http://www.buncombe.k12.nc.us/

http://www.henderson.k12.nc.us/

http://www.madisonk12.net/

http://www.transylvania.k12.nc.us/


http://www.firstwnc.org/

http://vayahealth.com/

http://www.buncombecountychildrencollabortive.org/

http://www.fifnc.org/

Statewide Resources http://www.ncdhhs.gov/dma/medicaid/capchildren.htm Medicaid is a health insurance program for low-income individuals and families who cannot afford health care costs. Medicaid serves low-income parents, children, seniors, and people with disabilities. The Community Alternatives Program for Children (CAP/C - also known as the Katie Beckett waiver) provides home and community based services to medically fragile children who, because of their medical needs, are at risk for institutionalization in a nursing home. http://www.dpi.state.nc.us/ec Exceptional Children Division assures that students with disabilities develop mentally, physically, emotionally, and vocationally through the provision of an appropriate individualized education in the least restrictive environment. Their website contains helpful parent resources, procedural safeguards, and parent rights handouts for download. http://www.ncei.org/ei/itp/cdsa.html Children’s Developmental Service Agency provides early intervention services to eligible children from birth to age three and their families. http://www.ncdhhs.gov/dph/wch/families/helplines.htm NC Department of Health and Human Services: Children with Special Health Care Needs Helpline – for those living with, care for and concerned about a child with special health care needs. Information about potential health care programs and funding resources in NC. http://nccdd.org/ NCCDD has 40 members appointed by the Governor of which 60 percent are required to be people with intellectual or other developmental disabilities (I/DD) or family members. Others members include state legislators, top state agency officials and representatives of Local Management Entities/Managed Care Organizations (LME/MCO) and service providers. The Council meets quarterly and oversees both the provisions of the Developmental Disabilities Assistance and Bill of Rights Act (DD Act) and to assure the Council is a member-driven, effective, efficient organization. The NCCDD works on behalf of over 185,000 people with I/DD living in NC. The work of the Council is directed to help communities become more inclusive of people with I/DD and their families.

National Resources http://www.aap.org/ American Academy of Pediatrics www.HealthyTransitionsNY.org For youth with developmental disabilities ages 14-25, family caregivers, service coordinators, and health care providers. It teaches skills and provides tools for care coordination, keeping a health summary, and setting priorities during the transition process. It features video vignettes that demonstrate health transition skills and interactive tools that foster self determination and collaboration. http://www.medicalhomeinfo.org/ Provides resources for health professionals, families, and everyone interested in creating a family-centered medical home for all children and youth.

www.growthcharts.com Height and Weight Charts for Children with Down Syndrome

Other versions of care notebooks and helpful forms can be downloaded at: www.cshcn.org Information on care notebooks & emergency preparedness http://www.aap.org/ hrtw.org www.FullLifeAhead.org specialchildren.about.com/od/medicalissues/qt/notebook.htm

http://www.ncdhhs.gov/dma/medicaid/capchildren.htm

http://www.dpi.state.nc.us/ec

http://www.ncei.org/ei/itp/cdsa.html

http://www.ncdhhs.gov/dph/wch/families/helplines.htm

http://nccdd.org/

http://www.aap.org/

http://www.healthytransitionsny.org/

http://www.medicalhomeinfo.org/

http://www.growthcharts.com/

http://www.cshcn.org/

http://www.aap.org/

http://www.fulllifeahead.org/

5

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