MY PERSONAL PREVENTIVE HEALTH PLAN

1. MY PERSONAL PREVENTIVE HEALTH PLAN Presented by Linda Tupper RN Consultant, Delmarva

2. Training Objectives • Understand what health means • Explore how to start navigating health • Setting appointments • Understanding preventive care • How to be in charge of your health

3. What’s this all about? • Being healthy is more than NOT being sick or having a disability • Being healthy means that you eat well, get some type of physical exercise, have regular medical checkups, cope well with everyday stressors and take time for yourself to just relax

4. What does this mean to me? • If you practice a healthy lifestyle it can: • Prevent complications associated with disabilities • Increase your energy level • Increase your overall body strength • Decrease your stress level • Increase your happiness level • Improve the overall quality of your life!

5. Where do I start? • First you need to select a primary care physician or pediatrician • Talk to other individuals or families with similar disabilities about their healthcare provider • Make appointments with healthcare providers and use that time to interview them • Is the office accessible? • Is the provider familiar with individuals with disabilities? • Does the provider talk to you or just to your family member/caregiver? • Does the provider have the necessary time to spend with you during an appointment?

6. Where do I start? • Selecting your healthcare provider • Does the provider seem comfortable with you? • Does the provider use people-first language? • Will the provider co-ordinate all of your healthcare needs, like be in touch with specialists, if you need them? • If you have difficulty communicating, is the provider willing to take the time to learn how you communicate? • If you use a wheelchair, are the exam room and bathroom large enough to accommodate your chair easily? • If you use a wheelchair, is there a wheelchair scale? • If you use a wheelchair, is there assistance to help you onto an exam table if needed?

7. It’s appointment time! • Arrive a few minutes early • Bring a family member or a caregiver that knows you well • Bring your insurance information (Medicaid card, Medicare card, Private Insurance card) • Bring a complete list of all the medications that you take with the dose and times for each one (Ex: Depakote 500mgs. 3 times per day) • Include vitamins, herbs, supplements and any over the counter products you may use.

8. Appointment time • Bring a list (health history) that has your diagnoses, any surgeries, any hospitalizations, any problems you may be having and your family’s medical history • Bring a list of questions that you want your provider to answer • Take notes or have another person take notes for you about what the provider has told you • If you do not understand what you are told, ask questions or have your family or caregiver ask questions for you

9. Appointment time • If you are given a prescription, ask what it says, how it is spelled, what it will do to you or for you, what side effects it may have and what you need to do if you have a problem • If the healthcare provider uses big words that you do not understand, ask them to explain it to you with different words that you will understand

10. Appointment time • Be specific about whatever your problem is. For example: • Don’t just say “My stomach hurts” • Instead say “My stomach hurts after I eat anything” • Don’t just say “My hip hurts” • Instead say “When I walk across the room this hip hurts me. I’ve had problems with my hips before”

11. Appointment time • If you do not communicate verbally it may be more difficult for you to make the healthcare provider understand you • If you use a communication device, bring it with you to the appointment – make sure that it is programmed with the questions you want to ask • If your family or caregiver can assist you to explain the problem have them help you

12. Appointment time • Your family/caregiver may wish to explain in this way: • I’ve noticed that Nancy has started rubbing her eyes a lot and they look kinda red to me. Nancy, can you show them your eyes? Do you think she might have an infection? • John grimaces every time he is repositioned from his wheelchair to his bed or on his adaptive equipment. This started about a week ago. John’s caregiver has worked with him for 2 years and has never seen this before. Did I describe that right, John?

13. Appointment time! • You should be able to talk to your healthcare provider about the things that are important to you and your health. This includes discussing things like birth control, safe sex and sexuality. You should be able to talk about anything, but you may find that people are uncomfortable talking about these topics. This may be related to their religion, culture, generation or beliefs. • There is a person-centered planning guide for building healthy social and sexual relationships available at ww.ddcs.org that you may find helpful

14. Appointment time! Remember Your healthcare provider is a well educated person who has very good intentions. BUT You can ask questions and/or get a second opinion if you are uncomfortable with what you have been told or how you have been treated.

15. The Exam • Your healthcare provider will probably do a few things with you when you are in the exam room. • You should be weighed • You should have your height taken or be asked how tall you are • You should have your temperature taken • You should have your blood pressure taken • You should have your pulse taken • You should have your lungs listened to • You should have your ears looked at • You may have your reflexes checked • You may have your throat checked

16. The Exam • None of the things on the list should hurt you. If there is a problem you might be uncomfortable. For example, if you have an earache when they look in your ears it might hurt a little • Your healthcare provider should talk to you about what they are doing • After the exam is over your healthcare provider may tell you that you need to have some tests done. Some common tests are: blood work and x-rays. Always ask what they are for.

17. Prevent What? • Preventive health care is important for everyone. Having a disability does not stop you from getting things like high blood pressure, breast cancer, high cholesterol, heart problems, diabetes, blood clots, cataracts, hearing loss, female problems, male problems or other health problems.

18. Prevent What? • There are universal guidelines for tests that you should have at different ages to make sure that you stay healthy. These are the same for everyone. • There are also special guidelines for tests that you should have if you have any disability. • There are even more special guidelines for tests that you should have if you have certain disabilities or diagnoses like Down Syndrome, Sickle Cell Anemia, Spina Bifida

19. Prevent What? • Preventive Health • The annual physical exam has been replaced by the periodic health examination • How often this happens will depend on you and your specific medical conditions • If you have a seizure disorder you should be seen by your neurologist at least every year • If you have a psychiatric or behavioral disorder you should be seen by your psychiatrist at least every year

20. Preventive Health Care for Adults ( over 18) with Down Syndrome • Cardiac annual cardiac evaluation valve dysfunction • Auditory auditory testing every 2 years • Cataracts eye exam every 2 years • Hypothyroidism test annually

21. Preventive Health Care for Adults with Down Syndrome • Periodontal Disease dental exam 2 times yearly • Obesity annual test for diabetes diet and exercise are very important • Early Onset Alzheimer’s Disease Testing can be performed when the following occur: a change in behavior loss of function (physical or cognitive)

22. Preventive Health Care for Adults with Spina Bifida • Bladder Ultrasound • As needed, based on symptoms • CT Scan/MRI • As needed, based on symptoms • Cystoscopy • 10 years after augmentation, annually thereafter • Renal Blood Test • As needed, based on symptoms • Renal Scan • As needed, based on symptoms

23. Preventive Health Care for Adults with Spina Bifida • Renal Ultrasound • At least every two years • Spine X-Ray/MRI • As needed, based on symptoms • Urodynamic Studies • As needed, based on symptoms • Urinalysis • As needed, based on symptoms

24. Prevent What? • There is a special test that is done for men. It is called a Prostate Exam – this can be scary but is very important to prevent prostate cancer. • At age 50 • Yearly PSA blood test • Yearly Digital Rectal Exam • Exceptions: Age 45 for men who have an immediate family member diagnosed with prostate cancer or are of African ancestry.

25. Prevent What? • There are also special things that women should do to make sure that they stay healthy. • Monthly self breast exams • This may sound scary and you may not be able to do this without a little help but it is very important. The booklet “Women First : Breast Health for Women with Developmental Disabilities” is an excellent user friendly guide. You can get this at : http//wind.uwyo.edu

26. Prevent What? • Pap Smears – these can be very scary. This test is very important because it can find cervical cancer. Your disability may make this type of examination difficult and your healthcare provider may be uncomfortable about this. • There is a very helpful booklet, “A Provider’s Guide for the Care of Women with Physical Disabilities and Chronic Medical Conditions.” You can get this at: http://www.fpg.unc.edu

27. Prevent What? • Pap Smear/Pelvic Exams • Age 18 and over • Every 1 to 3 years • *After 3 or more consecutive normal exams the exam may be performed less frequently at physician discretion • *Maximum recommended interval is three years • If this cannot be done, there is a pelvic ultrasound

28. Prevent What? • Mammograms are another special test for women. There are many ladies that think these are scary too. This test takes pictures of your breast. This test is very important and can help prevent breast cancer. There are certain disabilities that make this test almost impossible. In those cases different kinds of pictures are taken and clinical breast exams should be done more frequently.

29. Prevent What? • Last on the list of special things about women is menopause. Some people believe that if you have Down Syndrome or a seizure disorder that this happens at an earlier age. It is important to tell your healthcare provider when you stop menstruating so that you can be evaluated for possible hormone replacement therapy.

30. How To Make Preventive Health Care Work For You • It is important to understand your risk of developing health problems. It is also important to get preventive care to stay healthy. Often, though, people with disabilities don’t get the kinds of preventive health services they need. Do you. . . • Put off getting medical checkups because it’s hard to get to the doctor’s office or because the office staff does not try to meet your needs? • Think that regular checkups aren’t really important because of your disability? • Feel frustrated because your doctor doesn’t answer your questions or discuss your health concerns like weight loss, smoking, birth control, or sexually transmitted diseases? • Want to know how to feel less anxious or nervous when talking with health care providers? • Feel that you’re not getting the right routine preventive screenings?

31. Preventive Healthcare • If you answered yes, you’re not alone!

32. It’s My Health – I Want To Be In Charge! • What do I need to do? • Learn and practice health care skills • Learn about your disability • Keep records about your health • Learn to make your medical appointments • Learn to arrange for transportation to your appointments • Learn about filling prescriptions • Be able to communicate your health care needs to your healthcare provider • Practice healthy life choices

33. It’s My Health - I Want To Be In Charge! • Know your rights • You have the right to prompt and appropriate medical treatment • You have the right to physical exercise • You have the right to a physical exam

34. It’s My Health - I Want to be in Charge! • Know your responsibilities • Eat properly • Exercise • Take medication as prescribed

35. Examples of activity physically challenged people can do. • Strength training, moving arms and legs in repetitions, muscle balance & gentle stretches • Walk if able – tread mill • Take a nature walk • Dancing • Wash the car • Mow the lawn – with supervision • Yoga • Basketball – shoot baskets • Soccer • Hand cycle or play wheelchair sports • Riding a bike, or stationary bike • Tai Chi • Swimming – water aerobics • Use the stairs • Can perform upper arm lifts/movements JUST HAVE FUN MOVING MORE

36. My Personal Health Thank you. Questions?

37. Ask Linda • Linda Tupper @ dfmc.org

38. References • A Life Span Approach to Nursing Care for Individuals with Developmental Disabilities; Roth and Morse, 1994 • Children with Disabilities, 3rd Edition; Batshaw and Perret, 1992 • Medical Care for Children and Adults with Developmental Disabilities; Rubin and Crocker, 2006

39. References • Health Care Guidelines for Individuals with Down Syndrome; Sept. 1999 • Care of Children and Adults with Developmental Disabilities; Health Notes, • 2003 • Provider’s Guide to Care of Women with I/DD; North Carolina Office on Disability, • 2003 • Partners in Health Care; North Carolina Office on Disability; 2006