1. University of Hawai’i Integrated Pediatric Residency Program Continuity Care Program Medical Home Module Case 4

2. A 5 year old girl with cerebral palsy recently moved from the mainland and is seeing you as a new patient in clinic. On physical exam, you note that she is unable to ambulate or eat independently, and has a tracheostomy in place. You estimate her language development to be equivalent to a 15 month old, with gross motor skills at the level of a 10 month old. Her parents both work and are interested in enrolling her and her healthy, normal twin bother into Kindergarten.

3. What are the problems in this case? 5 year old with cerebral palsy and tracheostomy 5 year old with cerebral palsy and tracheostomy Severe developmental delay Severe developmental delay Parents want to enroll patient in kindergarten Parents want to enroll patient in kindergarten Sibling needs to be enrolled in kindergarten Sibling needs to be enrolled in kindergarten New patient from mainland New patient from mainland

4. What elements of the health care and educational systems need to be involved? Educational needs Educational needs Special education for cognitive delay Special education for cognitive delay Health needs Health needs Tracheostomy care Tracheostomy care Feeding/Aspiration precautions Feeding/Aspiration precautions Bowel and Bladder incontinence Bowel and Bladder incontinence Wheelchair accessibility Wheelchair accessibility Medication administration Medication administration Speech, occupation, and physical therapy Speech, occupation, and physical therapy

5. Children with Special Health Care Needs Definition CSHCN are those who have or are at risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or an amount beyond that required by children generally. -Maternal Child Health Bureau, 1998

6. Special Considerations for CSHCN The overall prevalence of CSHCN is 13% The overall prevalence of CSHCN is 13% Only 53% of CSHCN have access to a medical home Only 53% of CSHCN have access to a medical home Only 40% of CSHCN have adequate care coordination Only 40% of CSHCN have adequate care coordination CSHCN with impaired activities of daily living are twice as likely to have difficulty getting needed referrals than CSHCN with normal ADLs CSHCN with impaired activities of daily living are twice as likely to have difficulty getting needed referrals than CSHCN with normal ADLs Strickland, Pediatrics, 2004

7. Why is coordination of care important? Coordination of care most distinguishes medical home from a traditional pediatric practice. Coordination of care most distinguishes medical home from a traditional pediatric practice. Patients with coordinated care are more likely to follow through on referrals. Patients with coordinated care are more likely to follow through on referrals. Most pediatricians believe they provide care coordination services (contacting schools, following up specialists reports, etc), but most are not! Most pediatricians believe they provide care coordination services (contacting schools, following up specialists reports, etc), but most are not! Gupta, Pediatrics, 2004

8. How would you coordinate care for this patient? Obtain medical records from past PCP and specialists Obtain medical records from past PCP and specialists Discuss and include family members in patient’s long term management plans Discuss and include family members in patient’s long term management plans Establish health care team consisting all consultants, therapists, nurses, educators, coordinators, and social work Establish health care team consisting all consultants, therapists, nurses, educators, coordinators, and social work Establish system where correspondence is reviewed and shared with all relevant team members Establish system where correspondence is reviewed and shared with all relevant team members

9. What actions would you take to establish a medical home for this child? 1. Family centered: Address parent concerns, include family in decision making process 2. Accessible: Enable 24 hour access to care, consider transportation and financial barriers 3. Coordinated: Establish regular communication between you, family and healthcare team members

10. What actions would you take to establish a medical home for this child? 4. Continuous: Call consultants with concerns, ask for communication following specialty visits 5. Compassion: Listen to parent concerns, be responsive to their needs 6. Comprehensive: Address all issues of care: including preventive health maintenance, psychological, social, and education needs 7. Culturally sensitive: Be respectful of differences in opinions, learn from your patients!

11. So what’s so important about the Medical Home anyways?

12. Impact of Having a Medical Home  experience delayed or foregone care  have unmet health care needs  have decreased school attendance  have unmet needs for family support Compared to children with a medical home, CSHCN without a medical home are more likely to: Strickland, Pediatrics 2004

13. Impact of Having a Medical Home Continuity of care is associated with: Continuity of care is associated with: Improved level of patient satisfaction Improved level of patient satisfaction Decreased patient mistrust Decreased patient mistrust Decreased hospitalizations Decreased hospitalizations Decreased ER visits Decreased ER visits Increased preventive services Increased preventive services Improved child health outcomes Strickland, Pediatrics 2004

14. Take Home Message… Every Child Deserves a Medical Home!

15. Medical Home Elements: 1. Family centered 2. Accessibility 3. Coordinated 4. Continuous 5. Compassion 6. Comprehensive 7. Culturally Effective

16. Which of the following DOES NOT describe a child with special health care needs? a. a 6 month old with otitis media b. a 2 year old with mild speech delay c. a 5 year old in foster care d. an 8 year old with attention deficit hyperactivity disorder disorder e. a 14 year old with well controlled asthma Answer: a

17. Which of the following statements regarding coordination of care is INCORRECT? a. coordination of care most distinguishes medical home from a traditional pediatric practice b. patients with coordinated care are more likely to follow through with referrals c. most pediatricians believe they provide patients with care coordination services d. most patients with special health care needs receive adequate care coordination from their pediatricians e. care coordination includes communicating study or lab results to parents Answer: d

18. According to national surveys, CSHCN who do not have a medical home are more at risk for which of the following? a. delayed health care b. unmet health care needs c. increased days of missed school d. unmet needs for family support e. all of the above Answer: e

19. Which of the following statements regarding the impact of the medical home is LEAST correct? a. Having a medical home is associated with increased patient satisfaction b. Having a medical home is associated with decreased patient hospitalizations c. Having a medical home is associated with decreased missed school d. Having a medical home is associated with increased acute care visits e. Having a medical home is associated with increased patient trust Answer: d