Accessing Healthcare Services 153 Accessing Services Finding services

Accessing Healthcare Services 153

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

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

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

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

Finding Services ¢ CCS l Nurse Case Manager helps find the special care center 158

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

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

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

Where to Get More Information ¢ Information about healthcare for people with disabilities l l 162 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: l l 163 Living Independently in Los Angeles (LILA) LA 211

Who Can Help Me? ¢ ¢ ¢ 164 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. 165

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

Are Health Care Services Accessible? l Geographic • Location • Available transportation 167

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

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

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

Coordinating care across systems ¢ Tips for coordinating care l List of the different systems (with contact name, address and phone number) • everyone on the list receive copies of records l l 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 171

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. 172

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

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

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

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

Getting and giving information l Need good information to make good decisions • Ask questions l Need good information to make good recommendations • Provide information and feedback 177

Getting and giving information l 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 178

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

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

Your Self-advocacy Tips 181

Healthcare Team Partner l 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. 182

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

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

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

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

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

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

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

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

Sources of Information ¢ ¢ 191 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. l l brochures Recommendations Resource lists Etc. 192

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

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

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

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

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

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

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

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

When someone says no: ¢ Make sure you are asking for something that the service system provides. l l 201 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. 202

Going for healthcare is sometimes like going to another culture. l You may not understand: • Provider’s way of doing things • the language (jargon or acronyms) l 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. 203

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 204

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 l looking at health, disabilities and illness, communicating, making decisions 205

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. 206

Things that you can do make it easier to get comfortable care ¢ Look for providers who are culturally and disability competent. l l 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. 207

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

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

Overcoming Language barriers ¢ Important to get accurate translations l l Look for providers with bilingual and bi-cultural staff Ask about staff training in cultural competence 210

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

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

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

How to Preserve Healthcare Benefits ¢ Special Needs Trusts l l l 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 214

How to Preserve Healthcare Benefits ¢ Transition to work programs l 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. 215

How to Preserve Healthcare Benefits ¢ Consolidated Omnibus Budget Reconciliation Act (COBRA) l l 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. 216

How to Preserve Healthcare Benefits ¢ Cal-COBRA l Special program in California • Companies with 2 - 19 employees 217

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

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