1. CYNTHIA MACLUSKIE How to Access Excellent Medical Care

2. Primary Care Doctor Is King Medicaid/EPSDT requires that the primary care physician request the treatment including medical interventions, ABA therapy with BCBA supervision, speech, physical therapy, and occupational therapy.

3. Using Your Primary Care Physician Effectively It is crucial to find a physician who you can work with closely. Update the physician on the therapies that are working and why. Ensure all reports from all other doctors and therapists are going to the primary care physician.

4.  See your physician consistently  Don’t call-make an appointment  Be respectful of their time  Let the scheduler know if it will be a long appointment How to Develop a Good Relationship with Your Primary Care Physician

5. Why bother? If you have AHCCCS you will need your primary care doctor to fight for your child to see a specialist. If you need an expensive intervention the doctor will fight with the medical director of your insurance or AHCCCS.

6. If you need to go to a hearing you will need a letter of medical necessity from your child’s doctor. The physician is your advocate inside the medical system. You may need your physician to testify on your child’s behalf.

7. ASK A FRIEND FOR A RECOMMENDATION CONSIDER “DATING” A FEW DOCTORS CONSIDER IF WHAT YOU ARE LOOKING FOR IS REALISTIC What if I hate my child’s doctor?

8. WHAT TO DO BEFORE THE APPOINTMENT Requesting A Medical Service

9. Make a list of all medicines and supplements your child is currently taking including dosage. Keep a health journal. Summarize it in a one page bullet point sheet so the doctor has an accurate health history. Be sure to summarize concisely so that you do not take more than 2 to 5 minutes. Make a list of reasons why you want to see a particular specialist or test. Make this concise so that you can use your time wisely. Research Your Concerns

10. Don’t Forget! Your insurance card Any paperwork requested Any records that the doctor needs A list of questions A written goal of what you want out of the appointment

11. Arrange for a respite worker, friend or spouse to attend the appointment with you. This way one adult is in charge of the child/children and you can pay complete attention to the doctor. If it will be a complicated appointment ask if you may record the appointment so that you can review later. Consider the Following:

12. At The Appointment Be concise and direct. Be an active participant in the appointment. Make sure to be unemotional. When the doctor asks you how your child is doing give a short list of your concerns.

13. Ask Detailed Questions  Why do I need it?  Will my insurance pay for it?  What does the test measure?  How accurate is the test?  How is the test preformed and how much discomfort will there be?  How should I prepare for the test?  When will I get the results?  Which lab is processing the tests and why did you choose that one?

14. More Questions  What is the ideal result that I want to get on this test?  When will I get the results? How will the results be shared with me?  What is this medicine for?  Does this medication replace anything my child is already taking?  How does my child take this medication? i.e. on an empty stomach or a certain time of day

15.  How long will my child need to take this?  What are the side effects?  Is this a new drug on the market?  What are the odds that my child may be allergic? What symptoms should I look for?  Is this medicine safe to take with other medicines or supplements my child already taking?

16. RATHER THAN HAVING A DOCTOR CALL WITH YOUR RESULTS CONSIDER MAKING AN APPOINTMENT. THIS GIVES YOU A CHANCE TO CONTINUE TO BUILD A RELATIONSHIP WITH THE DOCTOR. IT ALSO GUARANTEES THE DOCTOR’S COMPLETE ATTENTION AND PAYS THEM FOR THEIR TIME. Consider This

17. If the condition is related to autism have a copy of the study that shows this is common with kids with autism. I.e. Seizures. Bring a peer reviewed study showing that 30 percent of kids with autism have this and your list of reasons you believe your child might be having seizures. If the condition has nothing to do with autism make sure you state that you are seeing the doctor for a specific problem and that it is not related to autism. Autism?!?

18. Getting A Diagnosis

19. Getting A Diagnosis Question’s to ask…. How do you know my child has this condition? How was it diagnosed? What does this condition mean for my child’s overall health? Can it be treated? Does it have to be treated? What happens if I do not treat it? Should you conduct further tests to confirm the diagnosis? If you do, what are those tests necessary? What kinds of side effects or risks do they involve? What treatment options do we have to choose from? What are the pros and cons?

20. Additional Questions What are the benefits of seeking a second opinion? How can I find out more information about his condition or disease? Is there anything I can do to help control the condition? Who is the best in the world at treating this? Are there any clinical trails under way for this condition or disease? Where would you go or what would you do to treat this condition if this was you or someone in your family?

21. Call the Emily Center and request all research and studies on the disease or medical issue your child has been diagnosed with. Consider pursuing out of state services depending on the diagnosis. Confirm which doctors and hospitals are leading the way in the particular medical disorder your child is diagnosed with. Consider the Following:

22. Do the research If you do choose alternative medicine keep your doctor in the loop. There are a surprising number of open minded physicians. Don’t expect your mainstream physician to be able to read or understand alternative medical labs and tests. Don’t expect your mainstream physician to run DAN labs. Alternative Medicine Verses Mainstream Medical

23. PRIMARY CARE PHYSICIANS AND SPECIALISTS MUST FOLLOW THE RULES AND BEST PRACTICES. DAN DOCTORS HAVE GREATER FREEDOM TO EXPERIMENT. YOU MAY HAVE TO THE BASICS FIRST BEFORE A DOCTOR WILL DO WHAT YOU THINK THEY SHOULD. EXAMPLE: A GI DOCTOR WILL ASSUME THAT YOUR CHILD IS NOT GAINING WEIGHT BECAUSE THEY ARE NOT EATING ENOUGH CALORIES. YOU MUST FIRST DEMONSTRATE TO THE DOCTOR THAT YOUR CHILD IS CONSUMING ENOUGH CALORIES TO MAKE THEM LOOK MORE DEEPLY. PHYSICIANS WILL ALWAYS RULE OUT THE MOST LIKELY CAUSE FIRST. Remember

24. DAN Doctors Always fax your questions to the doctor in advance of the appointment. Never chit chat. Stay on track as you are paying per minute. Always research their advice and diagnosis just as you would a mainstream physician. Have as many tests and treatments through your primary care or specialist to save money

25. Always Get A Second Opinion When….  You child needs surgery.  Your doctor can not make a diagnosis.  Your doctor is not a specialist.  The treatment is not working after a reasonable amount of time.  Your doctor is not taking your child’s symptoms seriously enough.

26. Got EPSDT? If you have Medicaid all services must be recommended by the primary care physician. If you can prove that your child improved with treatment it must be covered regardless if the plan covers it. When denied services appeal and go to fair hearing.

27. Remember! Always keep a copy of all your child’s records. Always keep a record of all correspondence with the insurance company and/or DDD and Long Term Care. Conduct all business with DDD in writing. Your Primary Care Physician is key to winning services.