1. 153 Accessing Healthcare Services

2. 154 Accessing Services Finding services Understanding eligibility What to do if you’re turned down Where to get more information Who can help me

3. 155 Finding Services HMO or Medi-Cal Managed Care Choose from a list of provider Primary care provider refers to specialists

4. 156 Finding Services Fee for service Medi-Cal, No list Call providers to see if they take Medi-Cal. Large teaching hospitals such as Childrens Hospital Los Angeles, UCLA and County USC

5. 157 Finding Services Private insurance list of preferred providers Private Pay clinic with sliding fee scale. free clinics in Los Angeles clinics operated by the Health Department. county hospitals like County USC or Harbor UCLA

6. 158 Finding Services CCS Nurse Case Manager helps find the special care center

7. 159 Eligibility “Can I qualify or use this program” Can be based on Age Family income Residence (where you live) Residence status (are you a citizen, are you documented or undocumented) Disability

8. 160 Eligibility Entitlement If you meet the eligibility requirements, they have to take you. They cannot say that they ran out of room or money.

9. 161 What To Do if You’re Turned Down Every program has an Appeal Process. Learn the appeal process what the program covers how the appeal process works. Easier to learn when there isn’t a problem.

10. 162 Where to Get More Information Information about healthcare for people with disabilities Protection and Advocacy, Inc. The Health Consumer Center of Los Angeles

11. 163 Where to Get More Information You can get information about community resources and specific care centers through: Living Independently in Los Angeles (LILA) LA 211

12. 164 Who Can Help Me? Health Consumer Center of Los Angeles Protection and Advocacy Inc. National Healthlaw Program

13. 165 Are Health Care Services Accessible? Care that you can use and is helpful to you. More than just wheelchair ramps or elevators.

14. 166 Accessibility Financial Affordable? Is there a system that pays for this care? Cultural Does the system/provider respect and understand your beliefs preferences

15. 167 Are Health Care Services Accessible? Geographic Location Available transportation

16. 168 Are Health Care Services Accessible? Environmental/ structural Structural barriers noise or other uncomfortable things

17. 169 Are Health Care Services Accessible? Linguistic Communicate? Written information? Adapted from: Los Angeles Medical Home Project for Children with Special Needs

18. 170 Coordinating care across systems Care from several different systems Each system know about the others Care coordinator, can help with this

19. 171 Coordinating care across systems Tips for coordinating care List of the different systems (with contact name, address and phone number) everyone on the list receive copies of records Ask your service coordinator to help keep track of the different systems Get copies of all records and keep them in a notebook or file. Adapted from: Los Angeles Medical Home Project for Children with Special Needs

20. 172 Knocking on the right door People are turned down for services when they ask the wrong system or provider. Go to the right source for assistance.

21. 173 Knocking on the right door Healthcare systems are responsible for things that are medically necessary necessary for your health and usually means that something isn’t experimental.

22. 174 Knocking on the right door Services needed to live in the community or succeed in school aren’t considered medically necessary Regional Center Special Education

23. 175 Self-advocacy skills An Advocate is someone who acts on behalf of themselves or others to bring about change

24. 176 Self-advocacy skills A self-advocate Is assertive, this includes Objecting to things you don’t agree with asking questions giving your opinion. If you don’t share information and feelings, things will stay the same instead of getting better.

25. 177 Getting and giving information Need good information to make good decisions Ask questions Need good information to make good recommendations Provide information and feedback

26. 178 Getting and giving information Getting more information Second opinions Going to another doctor for their opinion This is considered good care Many insurance companies want you to get a second opinion before getting a treatment like surgery Not insulting to doctors

27. 179 Tips for giving and getting information Prepare a thorough history Keep a list of questions that you can add to as concerns arise Bring a written list of questions with you write down or ask permission to tape the answers

28. 180 Tips for giving and getting information Not everyone will feel comfortable asking questions. Bring someone with you who has credentials or can provide support

29. 181 Your Self-advocacy Tips

30. 182 Healthcare Team Partner You are an important member of the healthcare team You make decisions and carry out recommendations It is important to understand your role and the roles of the other members of the team.

31. 183 Understanding How You Might be Perceived Providers have an expectation that people will act in certain ways like middle-class white people Different cultures have different behavior standards that might be misinterpreted Understanding this can help you get better care

32. 184 Common misinterpretations Lack of eye contact Disinterested May have autistic tendencies Not asking questions Satisfied with care No questions Disinterested Saying yes to a plan and not following through Noncompliant Understanding How You Might be Perceived

33. 185 Self-advocacy skills Maintaining records Track progress. Makes it easy to share information Advocate more effectively Paper trail

34. 186 Self-advocacy skills Keep a notebook or file Get it in writing, give it in writing, know where it is.

35. 187 Working with a Care Coordinator Helps keep track of all of the different systems and services Regional center – service coordinator CCS- nurse case manager Medi-Cal – case worker

36. 188 Working with a Care Coordinator Share information Ask questions and for help Let her/him know if there are any problems

37. 189 Developing Resources Gather information on: Diagnosis Treatment options Things they can do to get better or feel more comfortable Systems of care

38. 190 Sources of Information books and other literature non profit health organizations (e.g., United Cerebral Palsy or the American Cancer Society) Family Resource Centers

39. 191 Sources of Information the Consumer Health Information Program (CHIPS) support groups other parents the Internet

40. 192 Resources Keep a list or notebook with resources you use or hear about. brochures Recommendations Resource lists Etc.

41. 193 Transition from Pediatric to Adult Services There are many differences between pediatric and adult services. There are more programs serving children and The programs offer more support

42. 194 Transition from Pediatric to Adult Services Depending on the program, the transition may happen at different ages SSI – 18 years of age CCS – 21 years of age Important to learn how each service transitions and the adult services that are available.

43. 195 Age of Majority When youth turn 18 they become adults in the eye of the law They must consent for care or services Unless they are conserved.

44. 196 Becoming Independent Adults Different cultures view becoming independent differently Children need to learn skills begins before age 18. Help your child identify their goals preferences and dislikes

45. 197 Self-advocacy skills Participate in Taking care of their health planning meetings and appointments record keeping Learn About their health How to get information What to do if there is a problem.

46. 198 When Someone Says No: Bureaucratic Systems are often operate by making people go away Many people will go away if they are told “no” If people appeal the decision, very often the answer changes to “yes”

47. 199 When Someone Says No: Appealing may be the only way of getting a “yes” answer

48. 200 When someone says no: Learn our child’s medical (or service) system when things are going well. Learn to appeal decisions

49. 201 When someone says no: Make sure you are asking for something that the service system provides. The system may not be the best source for that information Use a trusted source for information about services and rights.

50. 202 When someone says no: You can get legal help if you were turned down and it is something you are entitled to. If you decide not to go back to that provider or use that system, let them know why.

51. 203 You may not understand: Provider’s way of doing things the language (jargon or acronyms) You may not know what is okay to ask what to do if you need more information. what to do if you disagree with what the provider recommends. Going for healthcare is sometimes like going to another culture.

52. 204 Learn the culture of healthcare systems Learn about office procedures, Ask your provider to explain medical jargon or acronyms Ask questions Ask for copies of test results and to put recommendations in writing. Adapted from: Los Angeles Medical Home Project for Children with Special Needs

53. 205 Does the healthcare system know how to serve you? Getting good healthcare includes getting healthcare in a way that feels comfortable. Different cultures may have different ways of looking at health, disabilities and illness, communicating, making decisions

54. 206 Does the healthcare system know how to serve you? It is important that your provider understands about how your culture is a part of your healthcare preferences.

55. 207 Things that you can do make it easier to get comfortable care Look for providers who are culturally and disability competent. Bi- cultural and/or bi- lingual staff Competent/collaborative in your area of disability Other patients from your culture Respects your culture But doesn’t stereotype Share information with your provider about your culture and what is comfortable for your family.

56. 208 Overcoming Language barriers Getting information in your language of comfort is your right. It helps you understand what is being presented, make good decisions, follow-through with the plan.

57. 209 Overcoming language barriers Using children or friends to translate is not appropriate. May translate incorrectly. Sometimes children will be asked to translate information that they are too young to hear.

58. 210 Overcoming Language barriers Important to get accurate translations Look for providers with bi- lingual and bi-cultural staff Ask about staff training in cultural competence

59. 211 Overcoming Language barriers Ask about language capacity. Do they use medically trained interpreters Are there written materials that are in your preferred language Other forms of information Audiotapes Videotapes Pictures

60. 212 Overcoming Language Barriers Ask for help with Coordinating appointments calling agencies Ask your provider to use resources like language translating services

61. 213 Overcoming Language Barriers Use community resources like Opening Doors Cultural community based agencies Adapted from: Los Angeles Medical Home Project for Children with Special Needs

62. 214 How to Preserve Healthcare Benefits Special Needs Trusts Must have SSI A way to provide financial support to a person with a disability without threatening their SSI eligibility Different than other types of trusts must be set up by a lawyer who is experienced in setting up special needs trusts

63. 215 How to Preserve Healthcare Benefits Transition to work programs Taking a job might interfere with their benefits like SSI and Medi- Cal. Programs like the 250% Working Disabled Medi-Cal Program allow you to keep your Medi-Cal until covered by employer.

64. 216 How to Preserve Healthcare Benefits Consolidated Omnibus Budget Reconciliation Act (COBRA) When you leave a job that provides health insurance You can pay out of pocket, up to 110% of premium cost, to continue the insurance for up to 18 months In some cases up to 36 months for dependent children.

65. 217 How to Preserve Healthcare Benefits Cal-COBRA Special program in California Companies with 2- 19 employees

66. 218 Summary Introduction to Healthcare Systems Common Information Children’s Systems of Care Adult Systems of Care Accessing Healthcare How to Give a Presentation

67. 219 How to Reach Me – Fran Goldfarb 323 671-3831 fgoldfarb@chla.usc.edu