Rhonda Weathers, MS, Research Associate, North Dakota Center for Persons with Disabilities (NDCPD) Dr. Thomas Carver, DO, Pediatrician, Trinity Health

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1 Rhonda Weathers, MS, Research Associate, North Dakota Center for Persons with Disabilities (NDCPD) Dr. Thomas Carver, DO, Pediatrician, Trinity Health October 2014

2 Edwards Time/Effort Law Effort X Time = Constant Given a large initial time to do something the initial effort will be small. As Time goes to zero Effort goes to infinity. Corollary: If it were not for the last minute nothing would get done.

3 A medical home is primary care that is: accessible, continuous, comprehensive, family-centered, coordinated, compassionate, and culturally effective to all children and youth, including children and youth with special health care needs. American Academy of Pediatrics, medicalhomeinfo.org

4 Goals History of the Pediatric Medical Home Current Medical Home Concept Benefits of Medical Home Participation

5 History of Medical Home 1967 Standards of Child Health Care Central source of a child s medical records Focus on CSHCN

6 Early Implementation Teaching medical students that a medical home and complete central medical record are the sine qua non of proper pediatric supervision Concept must spread from physicians to all agencies and people caring for children

7 Early Implementation 1974 Fragmented care has delays, gaps, duplications and diffused responsibilities Expensive and sometime hazardous to health Suggested Medical Home replace pediatrician, Family Physician or personal physician on forms

8 Health Care Home vs. Medical Home 1980 s Hawaii : 1 st state to adopt legislation to incorporate medical home into the Child Health Plan. All Children Deserve a Medical Home Family centered, community based, continuous, comprehensive, coordinated care using neighborhood resources.

9 1990 s 1989 AAP conference on medical home 1992 AAP policy statement on Medical Home 1999 National Center for Medical Home and initiatives for CSHCN 2002 AAP policy statement with 7 components of medical home and 37 specific activities

10 Medical Home in North Dakota North Dakota Integrated Services Medical Home Collaboration Series of 5 meetings from Feb 2009-Apr 2011

11 Medical Home in North Dakota 6 Teams Fargo, Valley City, Jamestown, New Town, Devils Lake and Minot Pediatricians, Family Medicine and NP Coordinator, Nurses, Social Worker, Administrator and Parent Partners

12 Foreign Territory Teach backs!!! Medical Home Index Scores CAHMI screener PDSA Parent Partners Routine Screenings Dev, SE, autism, depression, pp Dental Fluoride Care Plans

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19 Benefits Better Care Better Health Lower Costs

20 Benefits Health and Wellness Care vs. Chronic disease management

21 Guidelines for Healthy Living Sleep Eat Real Food Stay active Get your Vitamin D Protect your brain

22 Know the rules well so you can break them effectively Dalai Lama

23 Care Coordination A collaborative process that links children and families to services and resources in a coordinated manner to maximize the potential of children and provide them optimal healthcare. AAP policy statement

24 The Care Coordination Process Assessing and Identifying the Needs- Develop and use an assessment tool which will assist in gathering the information you will need to develop a plan of care. Developing a Plan of Care- The care coordination may clarify with the family which action steps the family will address and which will be addressed by the care coordinator.

25 The Care Coordination Process Implementation- The care coordinator organizes and assists the family with resources, referrals, coordination of care with specialty physicians, with schools and other agencies. Evaluation-Periodic evaluations to reassess the plan of care and address new needs are performed continually.

26 MAKING THE MOST OF THE CLINIC VISIT Care coordinators have the ability to coach and mentor families by assisting the family or care giver with making the most of the clinic visit. The care coordinator can encourage the family or care giver to: Plan ahead for the clinic visit Write down questions prior to the clinic visit Be open and honest about concerns Keep written records Use a care notebook Ask what to in the case of an emergency

27 WHO CAN DO CARE COORDINATION? A family member of a child with special health care needs has firsthand experience and could work very effectively as a care coordinator. Social workers have traditionally worked with linking people with appropriate services which is a vital part of care coordination. Nurses and nurse practitioners have the clinical experience and assessment skills in addition have experience in care planning and continuous monitoring. No matter the perspective whether family, nursing, social work or other, the major qualification is to be instrumental in resolving fragmentation in the healthcare delivery system.

28 WHY DO CARE COORDINATION? There are benefits to care coordination: Increased wellness resulting from comprehensive care is one of many benefits for patients and family that work with a care coordinator within a medical home. Coordinating referrals, communicating with other agencies or schools, interpreting medical reports or managing continuous communication improves parent satisfaction.

29 WHY DO CARE COORDINATION? There are barriers to care coordination: The lack of time was identified as major barrier that affects the ability to provide effective care coordination. Family members of children and youth with special health care needs have numerous concerns and may not be sure of the process. Noncompliance with a treatment plan could occur for various reasons as well as not understanding the recommendations made by the provider.

30 Physicians There are barriers to care coordination: Lack of incentive in the reimbursement system for the activities of care coordination and the concern that primary care providers are responsible for filling the gaps in the health care system. In one study, A physician noted that some physicians are not aware of how to work within a team to accomplish the numerous coordination tasks required (O Malley et.al, 2009). In addition, a culture of non-communication and non-ownership of coordination among providers exists (O Malley et al., 2009).

31 Case Studies

32 Affordable Care Act Under the health care law, if your plan covers children, you can now add or keep your children on your health insurance policy until they turn 26 years old. Thanks to this provision, over 3 million young people who would otherwise have been uninsured have gained coverage nationwide, including 5,000 young adults in North Dakota.

33 Health Care Directives The North Dakota Century Code outlines the statement of purpose of the intent and law related to health care directives states that Every competent adult has the right and responsibility to make the decisions relating to the adult s own health care including the decision to have health care provided, withheld, or withdrawn. (Retrieved from ).

34 Healthy Transitions Access to Health care Self-advocacy Self-management Medication Housing Employment Recreation & leisure Transportation

35 How to find adult health care provider Some Pediatrician see patients birth to 21 yrs. of age Care coordinator can ask open ended questions such as: How can I help? What are your thoughts? What do you see to be your greatest need? Encourage joint visits: Youth Pediatrician Adult provider

36 Routine health care and prevention Annual physical Annual visit to the eye doctor; unless diabetic then every 3 months for dilated exam Regular dental care Keep immunizations up to date Many diseases can be treated when detected early.

37 Routine health care and prevention Educating Patients to see your primary health care provider right away if: A lump or persistent sore appears on your body Have unexplained weight loss Develop a chronic cough Continued body aches and pains (retrieved from) MedlinePlusMedicalEncyclopedia.htm

38 Medication: Self Management Route of administration Time(s) per day Side effects Special instructions if any Record keeping Accurate medication log Pharmacy Refills

39 THE MEDICAL HOME CONCEPT Religious/ Spiritual Support Parent Support Services Medical Specialists Medical Home Child/Family Financial Assistance Educational Services (incl. E.I.) Mental Health Services

40 The Patient-Centered Medical Home from the Patient s Perspective Organized, Evidence-Based Care: My team reminds me proactively about needed tests or exams. My care is based on best practices, is seamless, and organized. Patient Centered Interactions: My team and provider listen to me. My needs, values, and preferences are heard. I can understand the information I get from my team. Source: Adapted from Community Health Partners. Livingston, MT

41 The Patient-Centered Medical Home from the Patient s Perspective Enhanced Access: I get care when I need it in the way I need it. Care Coordination: My team is following me and knows what I need. I am confident that my needs will be met. Engaged Leadership: The clinic is accountable and uses my feedback to improve. The clinic staff enjoys their jobs and can help me when I have concerns or problems. Source: Adapted from Community Health Partners. Livingston, MT

42 The Patient-Centered Medical Home from the Patient s Perspective Quality Improvement Strategy: The clinic wants to improve, asks for my feedback, and makes changes in response. Empanelment: I can choose my provider and healthcare team. I can access my team easily. Continuous and Team-Based Healing Relationships: I know my healthcare team and they know me. My team makes sure that I have the information and support I need to achieve my health goals. Source: Adapted from Community Health Partners. Livingston, MT

43 Transition Individual Education Plan Transition planning for the movement from high school to adult living is required for all students receiving special education services, according to federal legislation, Individuals with Disabilities Act (IDEA 2004). IEP teams must now include transition planning in the first IEP that will be in effect when the child is 16 years of age, or younger if deemed appropriate by the IEP team.

44 IMPORTANT QUESTIONS TO ASK 1. What do you know about your infant/child s diagnosis? 2. Do you have Health Insurance or have you applied for Medicaid? 3. Do you know who to contact and how to apply for Medicaid? 4. Do you have a social worker, care coordinator or parent partner? 5. Do you know how to contact Family Voices of North Dakota and what role they could play in the management of your child s health condition?

45 IMPORTANT QUESTIONS TO ASK 6. Who can provide child care if parents are working? Respite care, Day care etc. 7. Does your child qualify for a waiver and why would a waiver be beneficial? 8. What is Children s Special Health Services (CSHS)? How do you contact them and what can they do? 9. What is Early Intervention and Infant Development?

46 IMPORTANT QUESTIONS TO ASK 10. What is an IEP (Individual Education Plan)? 11. What is a transition IEP? 12. What concerns you as a parent the most?

47 Local & State Resources Human Service Centers: The primary objective of the human service centers are to provide services that help vulnerable North Dakotans of all ages to maintain or enhance their quality of life, which may be threatened by lack of financial resources, emotional crises, disabling conditions, or an inability to protect themselves. 8 ND Centers are located in: Williston Minot Devils Lake Grand Forks Fargo Jamestown Bismarck Dickinson

48 Financial Assistance Health assurance CHIP/Healthy Steps Medicaid-EPSDT Children s Special Health Services (CSHS) SSI

49 The Division of Children's Special Health Services (CSHS) within the North Dakota Department of Health Specialty Care Diagnostic and Treatment Program CSHS helps families pay for medical services for eligible children, including health-care visits and tests to diagnose chronic health conditions early and specialty care needed for treatment. Multidisciplinary Clinics CSHS funds and administers clinics that support coordinated management of 10 different types of chronic health conditions. Clinics provide access to pediatric specialty care and enable families to see many different medical providers and health-care professionals in one place at one time.

50 CSHS Care Coordination CSHS supports community-based programs to help families who have children with special health-care needs access services and resources. Partners include county social services and local public health. Metabolic Food CSHS provides medical food and low-protein modified food products to individuals with phenylketonuria and maple syrup urine disease. Russell-Silver Syndrome Program CSHS pays for growth hormone treatment and medical food for individuals with Russell-Silver syndrome.

51 CSHS Information Resource Center CSHS provides health-care resource information to families and service providers. Data Systems CSHS provides data about the population of children with special health-care needs and their families through the State Systems Development Initiative. Children with Special Health Care Needs Service System CSHS supports initiatives that lead to a community-based system of services for all children, youth and families with special health-care needs.

52 Advocacy and Family Support Groups FAMILY VOICES OF NORTH DAKOTA (FVND) This agency is a grassroots network of families and friends speaking on behalf of children with special health care needs and disabilities. FVND has a resource for children with Special Health Care Needs called New Beginnings. The guide is available at ND Parent to Parent To decrease family stress and isolation by matching experienced Support Parents with families whose children have a special health care need or disability; to increase families knowledge and use of community resources; to increase the confidence and skills of families by providing emotional support, positive parenting models and ongoing opportunities to acquire specific information and /or training; and to be an ongoing resource to families, health care providers, educators, policy makers, agency directors and others in the design, implementation and evaluation of programs for families.

53 Advocacy and Family Support Groups Child Placing Agencies Prevent Child Abuse ND Federation of Families Pathfinder Family Center Protection and Advocacy (P&A) Project North Dakota Disabilities Advocacy Consortium (NDDAC) Child Care Resource and Referral Network Easter Seals Goodwill ND, Inc. The ARC

54 Educational Services Schools IDEA-federal law ensuring free appropriate Public Education IFSP-Individual Family Service Plan (0-3) Part C within IDEA IEP- Individual Education Plan (3 up to 21) 504

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56 The Fundamentals of Medical Home The Fundamentals of Medical Home for Children and Youth with Special Health Care Needs and Developmental Disabilities is a self-study online (2 CEUS) course beneficial for service providers, social workers, nurses, educators, and parents. The course has five modules for learners: 1) Care Coordination 2) Medical Home 3) Health Benefits Counseling 4) Healthy Transitions 5) State and Local Resources for Children and Youth with Special Health Care Needs and Developmental Disabilities and their Families ~More people educated about how to deliver the medical home model of care means more children and youth in North Dakota will have access to a medical home.

57 Resources National Center for Medical Home Implementation: North Dakota Center for Persons with Disabilities : Fundamentals of Medical Home Family Voices of North Dakota

58 Questions & Answers

59 Contact Information Dr. Thomas Carver, DO, Pediatrician, Trinity Health office Rhonda Weathers, MS, Research Associate, North Dakota Center for Persons with Disabilities, Medical Home Education in ND, (MHEND) Project Director work