getting the most from your health care visits sponsored by: family voices of north dakota health...
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Getting the Most From Your Health Care Getting the Most From Your Health Care VisitsVisits
Sponsored by:Sponsored by:Family Voices of North Dakota Health Information and Family Voices of North Dakota Health Information and
Education CenterEducation Center
US Dept of Health & Human Services / Centers for Medicare US Dept of Health & Human Services / Centers for Medicare and Medicaid Services – Grant # 11-P-92506/8-01 & and Medicaid Services – Grant # 11-P-92506/8-01 &
Department of Human Services/Medical Services Division Department of Human Services/Medical Services Division /CSHS/CSHS
Welcome Parents!Welcome Parents!• Welcome parents • Goals for today:
– Better understand FVND– Various systems– Advocacy tips– How to get the most from your health
visit – Youth transition
What Does Family Voices What Does Family Voices Do?Do?
• Family Voices is a national grassroots clearinghouse for information and education concerning the health care of our children with special health needs.
• FVND is a statewide Health Information and Education Center
About Children and Youth About Children and Youth with Special Health Care with Special Health Care
NeedsNeedsChildren with special health care needs are
those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally
Definition developed by Maternal and Child Health Bureau July 1998
Our principlesOur principlesAbove all, Family Voices believes that:• All children deserve quality health care• Families with children who have special
needs and professionals who work with them have an expert understanding of what does and does not work within health care systems
• Health systems built upon a set of tested principles/practices that flow from this expertise can improve the health status and commitment to their children
Families are the core of any Families are the core of any health systemhealth system
• All families, including those who have children with special health needs, are the primary caregivers and educators for their children.
• They should be respected and valued for their expertise and commitment to their children
Health CareHealth Care• Children with special health needs receive
their health care from a combination of private and public financing and delivery systems.
• Approx. 14 million children in the U.S., 18,652 children in ND have a chronic health condition.
• 4 million have a condition that limits their school and play activities.
FlexibilityFlexibility• Whether public or private, a health
care system must provide effective, flexible services that are guided by medical and family needs, rather than by policies of standard medical insurance practices or government bureaucracies
Comprehensive, Comprehensive, coordinated, community coordinated, community
based carebased care• Quality health care means a coordinated
system of comprehensive services• Prevention, education, screening,
diagnosis, primary and specialty care, hospitalization, medication and supplies, equipment, and rehabilitation all available as close to the family’s home as possible
Family-professional Family-professional partnershippartnership
• Outcomes improve when families and professionals make decisions jointly, respecting the expertise, talents, and resources that each brings to the care of the child with special health needs.
Cost effectivenessCost effectiveness• By focusing on outcomes, allowing family
choice, and strengthening and supporting the role of families in health systems, costs can be reduced.
• The elimination of duplicative procedures, unnecessary paperwork, and administrative overhead also reduce costs
• As families we practice cost containment every day
Universal AccessUniversal Access• In order for this nation and it’s
children to be healthy, it must guarantee unconditional access to quality primary and specialty health care at a reasonable price
• Regardless of: family’s health, income, employment, location pre-existing condition or prior utilization of services
Quality assuranceQuality assurance• Working as partners and
remembering these principles, families and health professionals must regularly review and provide feed back on health care financing and delivery.
Community Community ResourcesResources
Umbrella of ServicesUmbrella of Services
Health Systems
Developmental Disabilities
School Services
Vocational Rehabilitation
Dept. of Social Services
Family Support SystemsFamily Support Systems• Family Voices of North Dakota• Pathfinders• ND Family to Family• Federation of Families for Children
with Mental Health• Experienced Parents
Introduction to CSHCNIntroduction to CSHCNChildren with Special
Health Care Needs:
Impacted by most systems
Impact the whole family
May have insurance or funding streams
Need to understand all the systems available
Health Payer SystemsHealth Payer Systems
Health Insurance CHIP/Healthy
Steps Medicaid –
EPSDT Children’s Special
Health Services SSI
SystemsSystems
Every system has….– Eligibility Requirements– Processes & Procedures – Language, Terms &
Definitions, and Acronyms
– Appeals Processes
Developmental Disabilities Developmental Disabilities ServicesServices
– DHS PROVIDE:
– Early Intervention (0-3 years of age)
– Family Support
– Respite
– Adult Services
Contact the Regional Human Service Center
School ServicesSchool Services Schools
IDEA-federal law ensuring FAPE (Free and Appropriate Public Education)
IFSP (0-3) Part C within IDEA
IEP (3-up to 21) 504
Advocacy Resources- Pathfinders (PTI) (P & A) Protection and
Advocacy Legal Aid ARC Disability Specific
Organizations
Resources-who else to call– Pathfinders (PTI)-Education– Protection and Advocacy (P&A)-Priorities education &
DD eligibility
– Family Voices-Health, Insurance, Policy, Education, Information, Resource information, support, etc.
– ND Family to Family –Parent connections 1:1– Developmental Disabilities Council– Federation of Families/Mental Health Association – Disability Specific Organizations-ARC
Resources to CallResources to Call
What We Know…What We Know…
We ALL want what is best for kids! Accessing systems are confusing. Families may get very frustrated! There is help Systems don’t make access for families easy. A families ability to advocate on behalf of their
child’s fluctuates with life and family situations!
If in doubt call another parent
LanguageLanguage
Each system has its own language Alphabet Soup –ask if you don’t know an
acronym
For ExampleFor Example
• Ask questions, you need to know…. • Private Insurance Benefits (who pays
hospital, therapies, etc.)– What is the eligibility requirements for Medicaid– Where do I locate Family Support from DHS– Title V Program-(CSHS-Health Care Program for
Children with Special Needs, what do they do?) – School Services & Early Intervention
But what if child needs a stander, or other equipment?
Innovating ResourcesInnovating Resources
County may have a home modification program Clubs and organizations in your community (Sorority/fraternity, youth projects or
community service) Employers (foundations, human resources
depts.) Organizations such as North Dakota
Association of the Disabled or Interagency Program for Assistive Technology
Important Eligibility Important Eligibility ConsiderationsConsiderations
How old is the child What is available What does the program require
(For example: evaluations, letters, etc.)
Is it medically necessary READ policy, regulations and law
Eligibility for MedicaidEligibility for Medicaid
Doors to Access Medicaid
Medically Needy
TANF
SSI
SPED programs
No matter what door….
ALL Children are eligible for EPSDT if they qualify for
Medicaid
EPSDT EPSDT Early Periodic Screening Diagnosis Early Periodic Screening Diagnosis and Treatment/ND Health Tracksand Treatment/ND Health Tracks
For children birth up to 21
The screen is the first step to accessing EPSDT services
The screen is a HEAD to TOE unclothed physical exam
Avenue to identify medical necessity
Additional benefits when justified
ObtainingObtainingMental HealthMental Health
ServicesServicesWhere to Start-Can Be difficult to locate
Ask your child’s doctor
Mental Health vs. Physical Health
Dual Diagnoses
EPSDT
Providers-DHS
Support
Federation of Families
Mental Health Association
AdvocacyAdvocacy• Parenting a child
with special health care needs is not easy
• WE are there with you
• Empowerment-issue starts with one person (me), others may have the same issue (we), working together (power)
AdvocacyAdvocacy• Believe with all
your heart that your child, like all children is wonderful (even when he/she gobbles up most of your time
AdvocacyAdvocacy• Connect with another family as soon
as possible. • Look for a support group, parent
organization• Meet the parent next to you at the
clinic
AdvocacyAdvocacy• Learn everything about the child’s
diagnosis.
AdvocacyAdvocacy• Locate specialty clinics• Childhood programs• Financial eligibility for programs• Where to get the best care
AdvocacyAdvocacy• Keep records! FVND Care Notebook
can be downloaded at www.geocities.com/ndfv/ in the interactive section
AdvocacyAdvocacy• Track phone calls, doctor visits,
insurance bills, forms. Take notes and date, use a tape recorder, and request copies
• Become an expert on your child’s health insurance plan whether public or private
List of information to gather and List of information to gather and recordrecord
• Medical Information~include you child’s diagnosis, history, immunizations, medications, surgical.
• Identify what to do in an emergency situation and share this information with your child’s sitter, teacher, emergency medical systems and others.
Keeping records cont.Keeping records cont.
• Hospital/clinic records and reports: Ask for and keep every piece of paper about your child by the hospital, clinic etc. It is your right to have this information
• Personal notes and observation~take your own notes each time you talk to your child’s doctor, nurse or other providers. Record milestones and achievements!
Keeping records contKeeping records cont• Insurance information~what does the
plan cover, how does the plan work. Keep information that explains the plan
• Assistance programs~keep up with information about helpful for which your child is eligible
• School records~include report cards, IFSP, IEP, any notes from school or your own notes
Keeping records contKeeping records cont..
• Child care/after school/summer programs~are there guidelines or rules?
• Telephone contact notes~make notes of phone calls you make or receive about your child
Keeping records contKeeping records cont..
• Correspondence~keep a copy of any time you receive or write a letter to your child’s doctor, teacher, insurance
• Expense and travel logs~keep up with this information for tax and insurance reimbursements
• Meetings and brochures~you never know when a brochure or presentation handout may come in handy
AdvocacyAdvocacy• Develop partnerships with the
professionals in your child’s life. Your expertise about your child will help them in practicing family centered care.
• Find one professional who knows you, your family and your child very well and who will advocate with you as a partner
AdvocacyAdvocacy• Know that YOU are your child’s best
advocate. No one can do the job as well.
• Teach your child to be an advocate, or prepare a sibling as you won’t be around forever
AdvocacyAdvocacy• Take Care of YOU, so that YOU stay
healthy• When your ready, help another
family, or work with parent groups or professionals to improve the care for all our children
• If you need help call Family Voices
How to Be an Effective How to Be an Effective AdvocateAdvocate
• Advocating means speaking on behalf of something or someone
• Being an advocate for your child means just that, which may take being assertive
• Assertiveness does not mean being angry, offensive or aggressive
How to Be an Effective How to Be an Effective Advocate Cont.Advocate Cont.
• Assertiveness is not…--Beating around the bush--Feeling too guilty or afraid to express
your needs--Agreeing with professionals no
matter how you feel – because professionals know best
How to Be an Effective How to Be an Effective AdvocateAdvocate
• Assertiveness is…--Expressing your needs clearly and
directly--Expressing your ideas without feeling
guilty or embarrassed--Sticking up for what you think your
child needs –even when “experts” may not agree
How to Be an Effective How to Be an Effective AdvocateAdvocate
• You can disagree without being disagreeable-
--Be:CalmWell-informedPreparedPersistent
How to Be an Effective How to Be an Effective AdvocateAdvocate
• Remember your goals• Stick to one issue at a time• Express your own feelings without
blaming others-use “I” messages, rather than “you” messages
Keep in MindKeep in Mind• Professionals cannot solve all the
problems or answer all the questions, be realistic, about what you can expect from the professional working with your child
• Professionals and service providers are human and like you, may be frustrated by your child’s condition or the ability to answer questions
Advocacy TipsAdvocacy Tips• Prepare yourself with information. Ask
questions. Know your rights.• Keep records. Be organized.• Don’t go it alone. Seek out other families
and supportive people.• Advocate with confidence! You are the
expert on your child.• Trust your instincts: You may be right,
even if professionals disagree with you. However be open to learning new things.
You Have a Right to Expect You Have a Right to Expect Certain Things When Seeking Certain Things When Seeking
Health CareHealth Care
• Respect for you and your child• Willingness to listen patiently• Taking your concerns seriously• Courtesy from office staff
What Is Quality CareWhat Is Quality Care
•You need to answer that question for yourself and your child. For some families it is:
--Family Centered Care
Family Centered Care……What is Family Centered Care……What is it?it?
Family centered care is an approach to planning and implementing services
and service systems that focuses on the family and is driven by the values,
preferences, priorities, and needs of the family.
Choosing a Health ProviderChoosing a Health Provider• Look for a provider whose style and
office procedures fit your needs• Can you talk with them easily?• Is the office location convenient and
accessible, are there hours or times you can call with questions?
• Who is available when the doctor is away and are they covered by your insurance?
Some Things to Consider:Some Things to Consider:
• If changing providers is something you consider
Ask yourself these questions:
--What are the options with your health plan?
--Is the provider a specialist or a generalist
Things to Consider;Things to Consider;
--You can interview new providers.
• Interview in person or on the phone.
• Ask clinic staff about clinic procedure/hours etc.
• Talk with your provider about:
Things to Consider;Things to Consider;-What you are looking for in a
provider.--What you want your role to be in
the health team.--How will decisions be made.--Access to your child’s medical
record.
Finding the right Pediatrician or Finding the right Pediatrician or Primary Care Physician (PCP)Primary Care Physician (PCP)
• Having a good relationship with your child’s pediatrician or PCP is especially important
• Find someone who values your expertise about your child and accepts you as a competent, knowledgeable partner on the health care team
• Good communication is essential
Some questions to askSome questions to ask
• In what health insurance plan do you participate?
• How much experience do you have in working with cshcn and their families? Are you willing to learn about my child with special health needs?
Some questions to askSome questions to ask
• Who sees your patients when you are not available?
• Are you comfortable making referrals to other health professionals and being a part of a medical team in partnership with me?
Questions cont.Questions cont.• To which hospitals do you refer
patients? Is one of them a children’s hospital?
• Can you schedule extra time for appointments, if needed? Do you have flexible office hours that includes weekends and evenings?
Questions cont.Questions cont.• How easy or difficult is it to reach you
by phone? What is the best time to call, if I want to discuss something about my child?
• Will you “go to bat” for my child, if the health plan does not readily approve needed health services?
Include your child as appropriate, in discussions about choosing a doctor and planning for health care
IdentifyIdentifyA. Understand your benefit plan
B. Understand health plan concepts/some plans now are under managed care. What is your policy?
C. Get, review and keep copies of your child’s medical records
Understanding Your PlanUnderstanding Your Plan• Your evidence of coverage is the
document that explains what your benefits are AND what your obligations are under the plan. It is a CONTRACT
Every health benefit plan is DIFFERENT
Understand Your PlanUnderstand Your Plan• It’s long BUT read through it• Look up sections you KNOW you will
need• Check what is COVERED• Check what is not covered
(EXCLUSIONS)• How much do you have to PAY?
Prepare for Medical VisitsPrepare for Medical Visits• Your time and your child’s service
provider time is valuable• Help your child prepare for the visit
by telling him/her what to expect• Ask questions
Good Communication Is Good Communication Is EssentialEssential
• Be ready to discuss your child’s condition with facts and if possible documentation
• Write down in a notebook your observations of behavior, illness, temperatures, eating habits or anything else that your service provider may need to know regarding your child’s health or diagnosis
Good Communication Is Good Communication Is EssentialEssential
• Write down questions you have or things you want to discuss. Do not hesitate to ask questions and do not be embarrassed to ask for clarification when you don’t understand
• If there isn’t enough time during the appointment to get all of your questions answered, ask if you can have another appointment, or if the service provider can call you at another time
Good Communication Is Good Communication Is EssentialEssential
• Work at understanding – listen and take notes, you cannot control how well another person will listen, but you can make sure you are doing your part
• With the service provider develop a plan-
--Write down the plan
Good Communication Is Good Communication Is EssentialEssential
--Decide who will do what in the plan
--Set time limits--Send a copy of the plan to the
service provider--Follow up on the plan
Good Communication Is Good Communication Is EssentialEssential
• If the relationship between you and your child’s provider is not working out, and you have tried everything to make it work…..You can also consider changing providers.
Preparing for a VisitPreparing for a Visit• Before the visit think about questions
or ideas, write them down and share with older children, to prepare them to make their own lists
Preparing for a VisitPreparing for a Visit• Know the purpose of the visit and
what might occur, length of time so that you and your child can prepare
Preparing for a VisitPreparing for a Visit• Think about your child’s progress and
what has changed since the last visit (changes in health, behavior, within the family etc.)
• Take a notepad to write down things you want to remember
Preparing for a VisitPreparing for a Visit• Ask questions, even if some are not
health related• Put worries into words
Preparing for a VisitPreparing for a Visit• Are there any concerns from those
who see your child in other settings (child care, school, therapy
• Bring notes from the latest visit with a specialist
• Encourage your child to ask questions or discuss concerns
• Be prepared for emergencies (enclosed EIF form)
During the visitDuring the visit• Talk about what matters to you.
Your way of seeing your child helps the health care provider understand your child’s development and priorities
• Be prepared to answer questions on sleep, responding to new people, school, stress
During the visitDuring the visit• Mention interesting events that have
occurred which will help develop a partnership
• Emergency room visits, seizures, changes in sleep or eating
During the visitDuring the visit• Family events, move, death, divorce• Ask about what is likely to happen in
growth and development, and what you can do to maintain a healthy development
• Is there any resources the clinic may have to learn more
After the visitAfter the visit• Identify…did you feel welcome?• Was there opportunities to discuss
your concerns
After the visitAfter the visit• Did the provider listen and
communicate well?
After the visitAfter the visit• Did you understand what was
discussed/and if there was something you didn’t understand did you ask for clarification?
• If not everything was answered, can you wait till the next visit? Is there someone else you can ask?
After the visitAfter the visit• If you didn’t agree with the provider
can you discuss it with them• Do you have names and numbers for
the referrals• Did you feel a part of the primary
health team?
After the visitAfter the visit• Do you need to share information
with others?• Did you receive positive feedback
about the general care and well being?
Teaching your child to be a self Teaching your child to be a self advocateadvocate
Sometimes self advocacy is referred to as Self Determination.
As our children mature, we naturally want them to become as responsible
and independent as possible.Even young children can often become active participants and
learn about their health condition, chronic illness and disability.
Teaching your child to be a self Teaching your child to be a self advocateadvocate
Self advocacy is a normal transition from childhood to adulthood and benefits the
entire family.Young self advocates learn and
practice important skills that will help them in many areas
throughout their lives.
Teaching your child to be a self Teaching your child to be a self advocateadvocate
They gain self confidence, feel better about themselves, and feel more in control of their
illness and disability.The biggest challenge for families
is knowing when and how to move to more of a supportive
role that promotes self advocacy.
Raising ExpectationsRaising Expectations • Being valued as a human being and
treated with dignity• Inclusive opportunities for social
experiences, dating, community involvement, recreation, and worship
• Education and/or job training• Increased freedom and independence • Meaningful work for reasonable pay
Transition Begins In Transition Begins In ChildhoodChildhood
• Career planning begins in utero• Focus on health promotion and normal growth
and development• Prevent secondary disabilities• Promote self-care and independence• Promote socialization and peer activities• Encourage early volunteer and later work
experiences• Refer to developmentally supportive services
early intervention, early start, special education or Section 504
Prepare For The Coming Of Prepare For The Coming Of Adolescence And “Letting Go”Adolescence And “Letting Go”Transition is more than a process. It takes all of us to make
the journey as smooth as possible.Medical Provider • Facilitating the process by setting the example at
different developmental stagesFamily• Changing care decision-making role to promote
independence and self-determination as developmentally appropriate.
Child/Youth• Assuming roles and responsibilities for preparing for a
healthy/productive adulthood.
Prepare For The Coming Of Prepare For The Coming Of Adolescence And “Letting Go” Adolescence And “Letting Go”
(Cont.)(Cont.)• Talk with the child/youth as well as their family.
Think about the future in 5 year segments. • Teach and re-teach about the health condition
based on changing cognitive development. • Ask the opinion of your young patients…get their
ideas… involve in decision making (assent to consent)
• Ask children and pre-teens what they plan to do when they "grow up" and support their plan.
• Ask how they can help their families and communities make their dreams become reality.
Medical Health Transition: Medical Health Transition: Support During AdolescenceSupport During Adolescence
• Focus on typical adolescent issues first
• Encourage health promotion and injury prevention activities
• Regularly do an adolescent risk assessment
Address Common Address Common Concerns Of AdolescenceConcerns Of Adolescence
• Am I like my friends? • Do I fit in?• Am I attractive?• Can I be sexy?• How Can I be safe?
Communicate Effectively With Communicate Effectively With Adolescents Means Talking and Adolescents Means Talking and
LISTENINGLISTENING• Be confident and act comfortable• Begin with open-ended questions and
follow with explicit questions• Move from less sensitive to more sensitive
question
Communicate Effectively With Communicate Effectively With Adolescents Means Talking and Adolescents Means Talking and
LISTENINGLISTENING
• Pay attention to inconsistencies (yours and theirs)
• Show that you care (validate their feelings)• Be available. How can they reach you
when they have a question? (ie, Phone or e-mail)
Adult Health Care Adult Health Care RealitiesRealities
• Providers may have less experience with “congenital” conditions
• Adult health care may be less interdisciplinary and more fragmented
• Overall there seem to be fewer resources for adults than children
• Adult health care providers have higher expectations for learning, personal choice, self-care, and independent follow up.
Prepare Youth To:Prepare Youth To:• Become more informed of their health
issues and proactive ways to maintain and sustain wellness.
• Take charge and be responsible for their own health
• Handle more choices with less direction
Prepare Youth To:Prepare Youth To:
• Become their own advocate• Become their own care coordinator• Find and use resources
Prepare for the Realities Prepare for the Realities of Health Care Fundingof Health Care Funding
This age group is more vulnerable due to age, life opportunities and complex needs
• Aging out of health care plans and services (private insurance, EPSTD, state Title V)
Prepare for the Realities Prepare for the Realities of Health Care Fundingof Health Care Funding
• Temporary jobs often do not include insurance or premiums are too high compared to the starting pay
• Desire to work and be independent may jeopardize dependent status to remain on health plan.
• Increased salary may affect SSI payments (lower or eliminate which then may cause to lose Medicaid)
Insurance Options: Private Insurance Options: Private Insurance Criteria for Insurance Criteria for
Maintaining:Maintaining:
• Birthday rule• Age cap• Permanent dependent status
What can we do for you?What can we do for you?• You can receive
our quarterly newsletter or become a part of our PASS IT ON list serv
• The list serv is private, sending local, state and national updates
Information and referralInformation and referral• We offer
individual assistance and support to families of children with special health needs
Information and assistanceInformation and assistance• To medical
professionals, service providers, community groups, educators, families and youth
Publications, Training and Publications, Training and AssistanceAssistance
• We have a wide variety of resource information for families and professionals. Videos, tapes, books etc.
• Networking linkages: local, regional and national links to assist in information needs
Publications, Training and Publications, Training and AssistanceAssistance
• We have many workshops available to families, let us know how we can meet your needs in your community
• You can also assist us in a variety of ways
How to contact Family How to contact Family Voices North DakotaVoices North Dakota
• You may reach us by phone: 701-493-2634
• Toll-free: 888-522-9654• Fax: 493-2635• E-mail: [email protected]• Web: http://www.geocities.com/ndfv/
Questions?Questions?