how to make the most of medical appointments for persons with intellecutal

1. HOW TO MAKE THE MOST OF MEDICAL APPOINTMENTS FOR PERSONS WITH INTELLECUTAL/DEVELOPMENTAL DISABILITIES Presented by Outreach Services September 2006 Introduction of Speaker Overview of presentation: One big challenge for many persons with DD is going to medical appointments. Is that any different from you and I? Not really. Many or most people experience anxiety when they have to go to a medical appointment, why would we expect persons with DD to be any different. The only difference is persons with ID/DD may not have as many coping abilities as we do. As with all of us, when we go to a medical appointment we want to get the most out of it as possible—get our money’s worth. Today we will look at some strategies that could be helpful in getting the most out of medical appointments for persons with Intellectual and Developmental Disabilities.Introduction of Speaker Overview of presentation: One big challenge for many persons with DD is going to medical appointments. Is that any different from you and I? Not really. Many or most people experience anxiety when they have to go to a medical appointment, why would we expect persons with DD to be any different. The only difference is persons with ID/DD may not have as many coping abilities as we do. As with all of us, when we go to a medical appointment we want to get the most out of it as possible—get our money’s worth. Today we will look at some strategies that could be helpful in getting the most out of medical appointments for persons with Intellectual and Developmental Disabilities.

2. Bullet one: Everyone is entitled to enjoy a safe and healthy life. Even though all of us will have health and medical issues from time to time during our life, routine medical and health evaluations are essential to keeping us as healthy as possible. Bullet two: Routine checks and screenings are even more important for persons who are unable to communicate what they are feeling or who may not know how a feeling or discomfort may be an indicator of a health condition.Bullet one: Everyone is entitled to enjoy a safe and healthy life. Even though all of us will have health and medical issues from time to time during our life, routine medical and health evaluations are essential to keeping us as healthy as possible. Bullet two: Routine checks and screenings are even more important for persons who are unable to communicate what they are feeling or who may not know how a feeling or discomfort may be an indicator of a health condition.

3. CHALLENGES FACED BY HEALTHCARE PROVIDERS Providing high-quality care to anyone is challenging enough, but added challenges are faced when serving persons with Developmental Disabilities Difficulty expressing symptoms Limited ability to participate in health plan Challenging behaviors Inability to comply with exams/treatment Bullet one: All of today’s primary care physicians and other healthcare providers face many challenges in providing high-quality services to their patients. Those challenges can be multiplied many times when providing services to persons with DD. Red Bullets: Persons with DD often cannot recognize symptoms and/or cannot easily describe what they are feeling to staff, family or healthcare providers. They do not make the connection between what they feel and a health issue. Many persons with DD are unable to participate fully in the development of a health care plan for themselves. This puts more responsibility on family, guardians, staff and healthcare providers. Some persons have challenging behaviors when it comes to doing examinations and treatments. Some persons are not able to understand the importance of their cooperation with exams and treatments making it more difficult to do accurate assessments.Bullet one: All of today’s primary care physicians and other healthcare providers face many challenges in providing high-quality services to their patients. Those challenges can be multiplied many times when providing services to persons with DD. Red Bullets: Persons with DD often cannot recognize symptoms and/or cannot easily describe what they are feeling to staff, family or healthcare providers. They do not make the connection between what they feel and a health issue. Many persons with DD are unable to participate fully in the development of a health care plan for themselves. This puts more responsibility on family, guardians, staff and healthcare providers. Some persons have challenging behaviors when it comes to doing examinations and treatments. Some persons are not able to understand the importance of their cooperation with exams and treatments making it more difficult to do accurate assessments.

4. CHALLENGES Activity: What are some of the challenges persons you work with or know present with healthcare? Write challenges presented by a person or two as identified by the group on flip chart leaving room for adding strategies later.Write challenges presented by a person or two as identified by the group on flip chart leaving room for adding strategies later.

5. HEALTH SCREENING RECOMMENDATIONS Persons with ID/DD need the same health screenings and maintenance as everyone else IDT along with the person and guardian/family determine what health care is needed based on individual needs Systematic approach to monitoring health screenings Bullet one: At minimum, persons with ID/DD need the same health screenings and maintenance as everyone else. Many times they need more intense health care due to complications and an increased number of health issues. Bullet two: Many persons we serve will need assistance in managing their health needs. The IDT, which includes the person, their family/guardian, direct support workers, and discipline staff, have the responsibility to ensure appropriate health services are provided. For some persons with ID/DD, the healthcare practitioner may be sufficient to coordinate health care. But many persons with ID/DD have more intense health care needs, more complications, and an intermingling of health and other needs that can best be sorted out be the Interdisciplinary Team looking at the needs from a variety of angles and working together. Bullet three: To stay organized, a systematic approach to tracking health screenings may be very useful. See “Annual Health Screening Recommendations” form in handout packet as an example.Bullet one: At minimum, persons with ID/DD need the same health screenings and maintenance as everyone else. Many times they need more intense health care due to complications and an increased number of health issues. Bullet two: Many persons we serve will need assistance in managing their health needs. The IDT, which includes the person, their family/guardian, direct support workers, and discipline staff, have the responsibility to ensure appropriate health services are provided. For some persons with ID/DD, the healthcare practitioner may be sufficient to coordinate health care. But many persons with ID/DD have more intense health care needs, more complications, and an intermingling of health and other needs that can best be sorted out be the Interdisciplinary Team looking at the needs from a variety of angles and working together. Bullet three: To stay organized, a systematic approach to tracking health screenings may be very useful. See “Annual Health Screening Recommendations” form in handout packet as an example.

6. PREPARE FOR A MEDICAL APPOINTMENT Check with provider to be sure they: 1. Are willing to provide services and accept means of insurance 2. Are willing to provide documentation and verbal input to appropriate IDT members 3. Are willing and able to provide special accommodations in the office Before even making an appointment with a medical provider, it is important to check out certain things to avoid wasting your time and the providers. Number one: Be sure they will serve the person, and accept Medicaid or other payment means available. Some providers only accept a certain percentage of Medicaid patients. Number two: Be sure he/she will cooperate with the special documentation needs required. For maximum communication both ways, added documentation is recommended. This could include more documents going to the medical provider and a request for the provider to provide written documentation beyond the usual for them. I have heard of some healthcare providers who are offended if a IDT member questions why they order something for the individual; this has been as serious as why they order certain medications. This is not acceptable as it does not allow the team to be informed and make other decisions based on strategies from the doctor/other provider. Recommend finding another healthcare provider in these cases, but this could be avoided with communication of expectations ahead of time. Number three: Also, be sure they will work with the team in making adaptations to put the person at ease in the office. This might include being willing to have the person come to the office several times before the appointment just to sit in the waiting room, go to an exam room, meet staff, get used to noises, smells, activity, etc. It might also include scheduling appointments at the best time of the day for the person such as early morning or when the office is less crowded if someone reacts negatively to crowds or noise.Before even making an appointment with a medical provider, it is important to check out certain things to avoid wasting your time and the providers. Number one: Be sure they will serve the person, and accept Medicaid or other payment means available. Some providers only accept a certain percentage of Medicaid patients. Number two: Be sure he/she will cooperate with the special documentation needs required. For maximum communication both ways, added documentation is recommended. This could include more documents going to the medical provider and a request for the provider to provide written documentation beyond the usual for them. I have heard of some healthcare providers who are offended if a IDT member questions why they order something for the individual; this has been as serious as why they order certain medications. This is not acceptable as it does not allow the team to be informed and make other decisions based on strategies from the doctor/other provider. Recommend finding another healthcare provider in these cases, but this could be avoided with communication of expectations ahead of time. Number three: Also, be sure they will work with the team in making adaptations to put the person at ease in the office. This might include being willing to have the person come to the office several times before the appointment just to sit in the waiting room, go to an exam room, meet staff, get used to noises, smells, activity, etc. It might also include scheduling appointments at the best time of the day for the person such as early morning or when the office is less crowded if someone reacts negatively to crowds or noise.

7. WHAT CAN BE DONE PRIOR TO EXAM/PROCEDURE? Possible Strategies to Make Healthcare Interventions more Tolerable Desensitization Counseling Training Pre-sedation General Anesthesia Individualized Desensitization Programs developed by the IDT including the Behavior Specialist can over time make a person more comfortable with medical visits. Desensitization techniques include strategies such as: Driving by the office Parking in lot Going to door Going in reception area Sitting in waiting room Meeting office personnel Sitting in exam room Seeing and handling equipment Seeing equipment used with staff Getting acquainted with doctor with no interventions Counseling – For some persons with DD, counseling or the opportunity to talk about how they feel at medical appointments, may be useful. Definitely not appropriate stand-alone strategy for everyone, but it does help to talk with the person about what is going to happen and why even if they cannot verbally participate in the discussion. Training – Some skills training may help in certain cases such as training to use certain signs to express feelings, pain, etc. Pre sedation- should be used only if other measures discussed are not successful and it is imperative that the exam/procedure be done. Pre sedation medications by Indiana policy must be ordered by a physician each time it is used. It is a STAT med rather than a PRN. No standing orders should exist. Sometimes it will be necessary to use pre sedation to help the person to relax so the procedure can be accomplished. There are some things you just cannot prepare for ahead of time such as sutures, emergency procedures or even routine procedures that occur only once a year or less. Flip side is doctor will not see person in their usual state and evaluation and accurate assessment will be impaired. General Anesthesia should be used only as a last resort for routine procedures and only if the person is unable to cooperate with necessary medical intervention and the above strategies were tried and unsuccessful. Coordinate multiple exams/procedures into one episode (dental, gynecological…)Individualized Desensitization Programs developed by the IDT including the Behavior Specialist can over time make a person more comfortable with medical visits. Desensitization techniques include strategies such as: Driving by the office Parking in lot Going to door Going in reception area Sitting in waiting room Meeting office personnel Sitting in exam room Seeing and handling equipment Seeing equipment used with staff Getting acquainted with doctor with no interventions Counseling – For some persons with DD, counseling or the opportunity to talk about how they feel at medical appointments, may be useful. Definitely not appropriate stand-alone strategy for everyone, but it does help to talk with the person about what is going to happen and why even if they cannot verbally participate in the discussion. Training – Some skills training may help in certain cases such as training to use certain signs to express feelings, pain, etc. Pre sedation- should be used only if other measures discussed are not successful and it is imperative that the exam/procedure be done. Pre sedation medications by Indiana policy must be ordered by a physician each time it is used. It is a STAT med rather than a PRN. No standing orders should exist. Sometimes it will be necessary to use pre sedation to help the person to relax so the procedure can be accomplished. There are some things you just cannot prepare for ahead of time such as sutures, emergency procedures or even routine procedures that occur only once a year or less. Flip side is doctor will not see person in their usual state and evaluation and accurate assessment will be impaired. General Anesthesia should be used only as a last resort for routine procedures and only if the person is unable to cooperate with necessary medical intervention and the above strategies were tried and unsuccessful. Coordinate multiple exams/procedures into one episode (dental, gynecological…)

8. PREPARE FOR A MEDICAL APPOINTMENT Prepare the Person for the Appointment 1. Discuss what is going to happen 2. Follow instructions to medically prepare person 3. Bring items to occupy the person Number one: Even if you think the person does not understand everything you say, talk with them about what is going to happen with the appointment. For some persons, it may be advisable to start this discussion several days in advance, for others, shortly before leaving may be best. Number two: Be sure to check and follow any pre-visit medical instructions such as fasting, wearing loose clothing. Number three: Taking preferred items with the person to the appointment can occupy them if there is a waiting period, reduce anxiety and result in a more positive experience for the person and allow for a more complete exam.Number one: Even if you think the person does not understand everything you say, talk with them about what is going to happen with the appointment. For some persons, it may be advisable to start this discussion several days in advance, for others, shortly before leaving may be best. Number two: Be sure to check and follow any pre-visit medical instructions such as fasting, wearing loose clothing. Number three: Taking preferred items with the person to the appointment can occupy them if there is a waiting period, reduce anxiety and result in a more positive experience for the person and allow for a more complete exam.

9. PREPARE FOR A MEDICAL APPOINTMENT Take pertinent information with you 1. Person’s insurance card 2. List of current medications and medication history 3. Health Record and information 4. Information from the IDT to the doctor 5. Forms for the doctor to complete 6. Directions to appointment 7. Agency on-call information 8. Family/guardian information 9. Name, location and phone of pharmacy Being prepared with the necessary information and documents for the type of appointment can mean the difference between a productive appointment and a waste of time for everyone. 1. The insurance card will be needed at all appointments. 2. Many times the doctor will want to know what medications the person is taking, the dosage, frequency and how long they have been taking them. It also helps many times to have a medication history with you if that has not already been provided to the doctor. 3. Any information about the person’s health, changes in their health, symptoms, information from members of the IDT, family, person will be helpful in making an accurate diagnosis. See “Health Record”, “Health Review Checklist”, and Health Care Provider Encounter”, “Medication History”, “Work Sheet”, “Record of Medical Consultant Visit” forms in handouts for samples. 4. It is important for someone who knows the person and their issues well to go with the person to the appointment. This is not always possible. Even if it is, information from other IDT members regarding symptoms, what they want from the appointment and information they want shared will make the appointment more successful. 5. You may have forms for the doctor to complete to help in communicating with IDT members such as the Health Care Provider Encounter form. Another very good way to get written information from the provider is to ask for a xerox copy of the doctor’s record. 6-9. Make sure ahead of time that you have the little things covered that can lead to big disasters—how to get to the office, phone numbers of pertinent staff if you need to call, family/guardian name and contact information, which pharmacy your agency uses, ….Being prepared with the necessary information and documents for the type of appointment can mean the difference between a productive appointment and a waste of time for everyone. 1. The insurance card will be needed at all appointments. 2. Many times the doctor will want to know what medications the person is taking, the dosage, frequency and how long they have been taking them. It also helps many times to have a medication history with you if that has not already been provided to the doctor. 3. Any information about the person’s health, changes in their health, symptoms, information from members of the IDT, family, person will be helpful in making an accurate diagnosis. See “Health Record”, “Health Review Checklist”, and Health Care Provider Encounter”, “Medication History”, “Work Sheet”, “Record of Medical Consultant Visit” forms in handouts for samples. 4. It is important for someone who knows the person and their issues well to go with the person to the appointment. This is not always possible. Even if it is, information from other IDT members regarding symptoms, what they want from the appointment and information they want shared will make the appointment more successful. 5. You may have forms for the doctor to complete to help in communicating with IDT members such as the Health Care Provider Encounter form. Another very good way to get written information from the provider is to ask for a xerox copy of the doctor’s record. 6-9. Make sure ahead of time that you have the little things covered that can lead to big disasters—how to get to the office, phone numbers of pertinent staff if you need to call, family/guardian name and contact information, which pharmacy your agency uses, ….

10. WHAT TO DO AT THE MEDICAL APPOINTMENT 1. Check in with receptionist to introduce your self and the person you are accompanying. 2. State reason you are there; encourage person to participate as able. 3. Discuss accommodations needed in waiting room. Make sure receptionist knows you are there to minimize wait time. If the individual is able to participate in any manner, let them do so—tell they are there, sign name or mark with you writing their name, handing papers to receptionist…. If special accommodations are needed by the person, make that clear upon arrival. If waiting room is full and the person you are with will be anxious in that environment, ask if there is another room or if you can wait outside and they notify you when ready. If you will need help with transferring person from wheelchair to exam table, notify receptionist…..Make sure receptionist knows you are there to minimize wait time. If the individual is able to participate in any manner, let them do so—tell they are there, sign name or mark with you writing their name, handing papers to receptionist…. If special accommodations are needed by the person, make that clear upon arrival. If waiting room is full and the person you are with will be anxious in that environment, ask if there is another room or if you can wait outside and they notify you when ready. If you will need help with transferring person from wheelchair to exam table, notify receptionist…..

11. WHAT CAN BE DONE DURING THE EXAM/PROCEDURE Avoid Conflicts Personal Relationship between person and provider Follow same routine each visit Use recognition and empowerment to gain cooperation Reinforce cooperation frequently Effectively communicate how and why There are some things that can be done by the healthcare provider during the exam/procedure that will help make the visit more comfortable for the person and more effective. We won’t always have control over what the healthcare provider does during visits, but these are things we can encourage the providers to do; tactful suggestion is another approach, as is discussing these things with the provider prior to the actual visit. Avoid conflict at all cost—you don’t want to go there – a no-win situation for everyone Red bullets: If possible, let the provider and individual meet before the actual visit Routine is important for most of us, especially persons with DD Include the person in what is happening to them; give them some control Be free with reinforcement of cooperation Explain what is going to happen and whyThere are some things that can be done by the healthcare provider during the exam/procedure that will help make the visit more comfortable for the person and more effective. We won’t always have control over what the healthcare provider does during visits, but these are things we can encourage the providers to do; tactful suggestion is another approach, as is discussing these things with the provider prior to the actual visit. Avoid conflict at all cost—you don’t want to go there – a no-win situation for everyone Red bullets: If possible, let the provider and individual meet before the actual visit Routine is important for most of us, especially persons with DD Include the person in what is happening to them; give them some control Be free with reinforcement of cooperation Explain what is going to happen and why

12. WHAT CAN BE DONE DURING THE EXAM/PROCEDURE Maintain positive, supportive environment Determine if exam/procedure is worth doing if person is uncomfortable with it Consider alternative methods of drug administration Use least invasive procedures possible Red Bullets: Stay positive to help the person stay positive and calm If a procedure is likely or is causing severe stress or resistance from the person, consider if it is worth doing Other means of med administration such as transdermal or transmucosal routes may be more tolerable and just as effective If there is a choice, go with least invasive procedures to promote comfort and cooperation.Red Bullets: Stay positive to help the person stay positive and calm If a procedure is likely or is causing severe stress or resistance from the person, consider if it is worth doing Other means of med administration such as transdermal or transmucosal routes may be more tolerable and just as effective If there is a choice, go with least invasive procedures to promote comfort and cooperation.

13. WHAT CAN BE DONE DURING THE EXAM/PROCEDURE Assist the person during the exam Stay with the person to provide support from a familiar person Provide information to healthcare provider, assist person to respond Refer healthcare provider to other contact person or to written information if you do not know answer Important for the individual to have someone they are familiar with stay during the exam/procedure if at all possible. Important for staff to be familiar with person and their health needs/issues. Having good complete records with you at appointment will help ensure needed info is available to provider, but there may be cases when info is not known or available and you will have to refer them to another contact.Important for the individual to have someone they are familiar with stay during the exam/procedure if at all possible. Important for staff to be familiar with person and their health needs/issues. Having good complete records with you at appointment will help ensure needed info is available to provider, but there may be cases when info is not known or available and you will have to refer them to another contact.

14. WHAT TO DO AFTER THE APPOINTMENT Obtain written results of appointment and recommendations Get signed doctor’s orders for all prescriptions and treatments Set up follow up appointment as indicated Return all forms, prescriptions, doctor’s orders, appointment card to appropriate staff Communicate results of appointment with IDT Bullet one: It is very useful to have written results of a medical visit including recommendations. Your agency may have a specific form for this purpose, but another way of getting it is to ask for a copy of the doctor’s notes. Bullet two: If a prescription or treatment is being ordered, be sure you have the signed script before leaving the office. Bullet three: Schedule next appointment if indicated before leaving office. Bullet four: Take all documentation to the appropriate person in your agency immediately upon returning from appointment so immediate action can be taken. Bullet five: Very important for a system to be in place to ensure IDT members know results of appointment so their interventions can be designed around that information. Refer to “Procedure for a Medical Appointment” form as an example.Bullet one: It is very useful to have written results of a medical visit including recommendations. Your agency may have a specific form for this purpose, but another way of getting it is to ask for a copy of the doctor’s notes. Bullet two: If a prescription or treatment is being ordered, be sure you have the signed script before leaving the office. Bullet three: Schedule next appointment if indicated before leaving office. Bullet four: Take all documentation to the appropriate person in your agency immediately upon returning from appointment so immediate action can be taken. Bullet five: Very important for a system to be in place to ensure IDT members know results of appointment so their interventions can be designed around that information. Refer to “Procedure for a Medical Appointment” form as an example.

15. STRATEGIES TO ADDRESS CHALLENGES Activity: Identify strategies that might address challenges listed earlier Go back to flip chart sheets and have group identify strategies from what they have learned in presentation that may address challenges listed.Go back to flip chart sheets and have group identify strategies from what they have learned in presentation that may address challenges listed.