Getting the Most From Your Health Care Visits

Getting the Most From Your Health Care Visits Sponsored by: Family Voices of North Dakota Health Information and Education Center US Dept of Health & Human Services / Centers for Medicare and Medicaid Services – Grant # 11 -P-92506/8 -01 & Department of Human Services/Medical Services Division /CSHS

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 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 with Special Health Care Needs Children 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 principles Above 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 health 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 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.

Flexibility • 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, coordinated, community based 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 partnership • 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 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 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 preexisting condition or prior utilization of services

Quality 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 Resources

Umbrella of Services §Health Systems §Developmental Disabilities §School Services §Vocational Rehabilitation §Dept. of Social Services

Family Support Systems • Family Voices of North Dakota • Pathfinders • ND Family to Family • Federation of Families for Children with Mental Health • Experienced Parents

Introduction to CSHCN Children 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 Systems § Health Insurance § CHIP/Healthy Steps § Medicaid – EPSDT § Children’s Special Health Services § SSI

Systems Every system has…. – Eligibility Requirements – Processes & Procedures – Language, Terms & Definitions, and Acronyms – Appeals Processes

Developmental Disabilities Services – DHS PROVIDE: – Early Intervention (0 -3 years of age) – Family Support – Respite – Adult Services Contact the Regional Human Service Center

School 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 to Call § 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

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

Language § Each system has its own language § Alphabet Soup –ask if you don’t know an acronym

For 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 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 Considerations § 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 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 Early Periodic Screening Diagnosis and 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

Obtaining Mental Health Services Where 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

Advocacy • 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)

Advocacy • Believe with all your heart that your child, like all children is wonderful (even when he/she gobbles up most of your time

Advocacy • Connect with another family as soon as possible. • Look for a support group, parent organization • Meet the parent next to you at the clinic

Advocacy • Learn everything about the child’s diagnosis.

Advocacy • Locate specialty clinics • Childhood programs • Financial eligibility for programs • Where to get the best care

Advocacy • Keep records! FVND Care Notebook can be downloaded at www. geocities. com/ndfv/ in the interactive section

Advocacy • 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 record • 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. • 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 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 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 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

Advocacy • 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

Advocacy • 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

Advocacy • 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 Advocate • 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 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 Advocate • 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 Advocate • You can disagree without being disagreeable--Be: Calm Well-informed Prepared Persistent

How to Be an Effective Advocate • 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 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 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 Certain Things When Seeking Health Care • Respect for you and your child • Willingness to listen patiently • Taking your concerns seriously • Courtesy from office staff

What 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 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 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: • 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; --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; -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 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 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 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. • 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. • 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

Identify A. 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 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 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 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 Essential • 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 Essential • 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 Essential • 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 Essential --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 Essential • 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 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 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 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 Visit • Ask questions, even if some are not health related • Put worries into words

Preparing 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 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 visit • Mention interesting events that have occurred which will help develop a partnership • Emergency room visits, seizures, changes in sleep or eating

During 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 visit • Identify…did you feel welcome? • Was there opportunities to discuss your concerns

After the visit • Did the provider listen and communicate well?

After 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 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 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 advocate 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 advocate 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 advocate 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 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 Childhood • 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 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 stages Family • 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 Adolescence And “Letting Go” (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: Support During Adolescence • Focus on typical adolescent issues first • Encourage health promotion and injury prevention activities • Regularly do an adolescent risk assessment

Address Common Concerns 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 Adolescents Means Talking and LISTENING • 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 Adolescents Means Talking and LISTENING • 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 Realities • 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: • 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: • Become their own advocate • Become their own care coordinator • Find and use resources

Prepare for the Realities of 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 of 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 Criteria for Maintaining: • Birthday rule • Age cap • Permanent dependent status

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 referral • We offer individual assistance and support to families of children with special health needs

Information and assistance • To medical professionals, service providers, community groups, educators, families and youth

Publications, Training and Assistance • 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 Assistance • 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 Voices North Dakota • You may reach us by phone: 701493 -2634 • Toll-free: 888 -522 -9654 • Fax: 493 -2635 • E-mail: fvnd@drtel. net • Web: http: //www. geocities. com/ndfv/

Questions?