Parent Leadership Creating Partnerships for North Dakota Families

1. Parent Leadership Creating Partnerships for North Dakota Families 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

2. On Your Way Here Today • You hoped you would

3. Today’s Goals • To provide helpful ideas and practice tools to help you work collaboratively with health care providers and payers • To encourage good consumerism in the health system • To provide helpful ideas and practical tools to help you coordinate your child’s care

4. 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

5. About Families WE all come from families. Families are big, small, extended, nuclear, multigenerational, one parent, two parents and grandparents. WE live under one roof or many. A family can be as temporary as a few weeks as permanent as forever. Families are dynamic and cultures within themselves, with different values and unique ways of realizing dreams. Together or families become the rich source of our cultural heritage and spiritual diversity.

6. Children With Special Health Care Needs • Are above all children who want to live a happy healthy childhood. • Our children live in towns, cities and rural areas. • They go to school, church and enjoy community activities.

7. Challenging Conditions • Some of our children have a physical disability, mental or emotional disabilities • Others have a chronic health illness

8. Our Children Cont. • Some may have a brief but life threatening medical problem • Others only need an accurate diagnosis • Some may need treatment,medicine or life sustaining technology

9. Health Care • Children with special health needs receive their health care from a combination of private and public financing and delivery systems. • Approx. 10 million children have a chronic health condition. • 4 million have a condition that limits their school and play activities.

10. 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.

11. 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 pre-existing condition or prior utilization of services

12. 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

13. 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.

14. 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.

15. 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.

16. 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.

17. What Can We Do for You? • You can receive our quarterly newsletter, weekly e-newsletter, sponsor workshops, and much much more

18. Information and Referral • We offer individual assistance and support to families of children with special health needs

19. Information and Assistance • To medical professionals, service providers, community groups, educators and families. • Families can also assist us in a variety of ways. If interested, let us know following this workshop

20. Publications and Assistance • We have a wide variety of resource information for families and professionals. • Networking linkages: local, regional and national links to assist in information needs.

21. How to Contact Family Voices of North Dakota You may reach us by phone at 701-493-2634 or toll free at 888-522-9654 • E-mail: fvnd@drtel.net • Web: http://www.geocities.com/ndfv/

22. Next Steps Being an Advocate for your child. What does it mean?

23. Next Steps It means doing whatever is necessary to assure your child gets what he or she needs and what you need as a family to support and care for your child. When you have a child with special health needs, families need to develop skills and knowledge to become better advocates for their children.

24. 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

25. 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

26. 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

27. How to Be an Effective Advocate • You can disagree without being disagreeable- --Be: Calm Well-informed Prepared Persistent

28. 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

29. 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

30. 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.

31. Finding Information and Support • Other families: Do you know other families? Talk to them. Contact your Family to Family Support Network 1-888-434-7436

32. Finding Information and Support • Phone book: try to find government programs and resources that serve your community, usually at the end of your phone book

33. Finding Information and Support • Library: can help you find out if specific disease or disability organizations have state or local chapters. Look for magazines or periodicals such as Exceptional Parentwww.eparent.com Libraries often provide computers for accessing the Internet to search for information

34. Finding Information and Support Cont. • Hospitals, clinics and health providers-ask about parent support groups and resource centers.

35. Finding Information and Support Cont. • Schools-for very young or preschool children find out about early intervention programs. For school age children who may need special education, learn what is available, how to contact parent training and information centers. Start by calling the local school district or speak to someone in special education services.

36. Support Cont. • Internet-some valuable web sites are www.familyvoices.org • www.familyvillage.wisc.edu • www.nichcy.org • Contact your Family Voices office in your state. For North Dakota 888-522-9654, They are they to help you find the information you are searching for!!!

37. Keeping Records Design a system that will best work for you. Some parents use notebooks or a binder with dividers. Some use a system in drawer or box. Whatever will make you more comfortable, your records help you to know what is happening.

38. 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.

39. 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!

40. 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

41. 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

42. 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

43. What’s a “Medical Home”?

44. What’s a Medical Home? • A medical home is not a building, house, or hospital, but rather an approach to providing health care services in a high-quality and cost-effective manner. Children and their families who have a medical home receive the care that they need from a pediatrician or other health care professional. Pediatricians, families, and allied health care professionals act as partners in a medical home to identify and access all the medical and nonmedical services needed to help children and their families achieve their maximum potential.

45. Definition of Medical Home Care that is: • Accessible • Family-centered • Comprehensive • Continuous • Coordinated • Compassionate • Culturally-competent And for which the pediatrician: • Shares responsibility

46. Benefits of a Medical Home • Increased patient and family satisfaction • Establishment of a forum for problem solving • Improved coordination of care • Enhanced efficiency for children and families • Efficient use of limited resources • Increased professional satisfaction • Increased wellness resulting from comprehensive care

47. Accessible Philosophically • Efforts made to meet needs of all patients and families Geographically • Care is provided in the child’s community Financially • All insurance, including Medicaid, is accepted and changes are accommodated

48. Family centered Recognition that: • Family is the principal caregiver and the center of strength and support for children • Parents are experts on their own children and are a source of essential information • Unbiased and complete information is shared on an ongoing basis

49. Continuous • Same primary health care professionals are available from infancy through adolescence • Pediatrician assists with transitions • - Hospital to home • - Home to school • - School to job or independent living • - Primary to secondary to tertiary • medical care

50. Comprehensive • Preventive and primary care is provided • Pediatricians have a knowledge of the full range of child health problems • Pediatricians are knowledgeable about resources within the community • 24-hour illness or emergency care is provided 7 days a week