Accessing Services • Finding services • Understanding eligibility • What to do if you’re turned down • Where to get more information • Who can help me
Finding Services • HMO or Medi-Cal Managed Care • Choose from a list of provider • Primary care provider refers to specialists
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
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
Finding Services • CCS • Nurse Case Manager helps find the special care center
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
Eligibility • Entitlement • If you meet the eligibility requirements, they have to take you. • They cannot say that they ran out of room or money.
What To Do if You’re Turned Down • Every program has an AppealProcess. • Learn • the appeal process • what the program covers • how the appeal process works. • Easier to learn when there isn’t a problem.
Where to Get More Information • Information about healthcare for people with disabilities • Protection and Advocacy, Inc. • The Health Consumer Center of Los Angeles
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
Who Can Help Me? • Health Consumer Center of Los Angeles • Protection and Advocacy Inc. • National Healthlaw Program
Are Health Care Services Accessible? • Care that you can use and is helpful to you. • More than just wheelchair ramps or elevators.
Accessibility • Financial • Affordable? • Is there a system that pays for this care? • Cultural • Does the system/provider respect and understand your • beliefs • preferences
Are Health Care Services Accessible? • Geographic • Location • Available transportation
Are Health Care Services Accessible? • Environmental/structural • Structural barriers • noise or other uncomfortable things
Are Health Care Services Accessible? • Linguistic • Communicate? • Written information? Adapted from: Los Angeles Medical Home Project for Children with Special Needs
Coordinating care across systems • Care from several different systems • Each system know about the others • Care coordinator, can help with this
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
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.
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.
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
Self-advocacy skills • An Advocate is someone who acts on behalf of themselves or others to bring about change
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.
Getting and giving information • Need good information to make good decisions • Ask questions • Need good information to make good recommendations • Provide information and feedback
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
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
Tips for giving and getting information • Not everyone will feel comfortable asking questions. • Bring someone with you who has credentials or can provide support
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.
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
Understanding How You Might be Perceived • 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
Self-advocacy skills • Maintaining records • Track progress. • Makes it easy to share information • Advocate more effectively • Paper trail
Self-advocacy skills • Keep a notebook or file • Get it in writing, give it in writing, know where it is.
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
Working with a Care Coordinator • Share information • Ask questions and for help • Let her/him know if there are any problems
Developing Resources • Gather information on: • Diagnosis • Treatment options • Things they can do to get better or feel more comfortable • Systems of care
Sources of Information • books and other literature • non profit health organizations (e.g., United Cerebral Palsy or the American Cancer Society) • Family Resource Centers
Sources of Information • the Consumer Health Information Program (CHIPS) • support groups • other parents • the Internet
Resources • Keep a list or notebook with resources you use or hear about. • brochures • Recommendations • Resource lists • Etc.
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
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. 18 21
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.
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
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.
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”
When Someone Says No: • Appealing may be the only way of getting a “yes” answer
When someone says no: • Learn our child’s medical (or service) system when things are going well. • Learn to appeal decisions
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.
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.