Health Care Planning

Frequently Asked Questions & Answers:

Q: What screenings or assessments should someone with a developmental disability have at the time of a checkup?

A: Disability expert suggests these screening guidelines:

Q:What immunizations are recommended for a person with a developmental disability?

A: Several vaccines are recommended for all healthy adults, including people with disabilities. These vaccines include:

Q:What should I do after a doctor's visit, to insure quality health care?

A:There are several important things that you can and should do after the visit to the doctor.

1. Make appointments for any special tests ( e.g., a mammogram) to be done.
2. Make an appointment with any specialist doctors, as referred. Accompany your loved one to the appointments and bring a copy of his/her current medical summary.
3. Fill prescriptions right away. Ask the pharmacist to use generic medicines when possible. Be sure you know and understand the following things about each medicine:

4. Set up a a schedule for taking the prescriptions. If the medicine(s) is to be long-term, consider using a "pill holder" or container, available in many shapes and sizes. They have compartments for days of the week and/or times of the day, and serve as reminders for taking the medicine.
5. Call the doctor to report any changes in the patient, good/bad. These might be a worsening of symptoms, side effects from medicines, or any other information you agreed to communicate.
6. Call back to the doctor's office to learn about specialists' reports and test results. Be sure you understand whether a change is needed in the patient's treatment plan; follow through with any changes.

Q: How often should a person with a disability have a checkup?

A: Anyone with a chronic condition like diabetes, severe allergies, or heart disease, should be seen periodically. Exactly how often depends on the severity of the condition and will be determined by the doctor when the person is seen. People who are on long-term medication should be seen at least once a year. If the medical condition of a person with a disability changes, make an appointment; don't wait for the next scheduled appointment.

There are other specific times when a doctor's visit should occur:

Q: What should I do if my family member seems sick, but I'm not sure if it's serious or not?

A: If you observe any of the following signs of illness or medication reactions in your loved one, call the physician right away:

1. high fever or temperature

2. Nausea or vomiting

3. Change in mood, consciousness, or behavior

4. Change in appearance/skin color

5. Problems with bowel movements or urination

6. Breathing or respiratory problems (If severe, always require a 911 call)

7. Pain

Carefully evaluate any signs or complaints of pain. Individuals have different pain thresholds. You know your family member and how much pain he/she can tolerate without complaining or showing signs of discomfort. Observe your loved one carefully and call the doctor or seek emergency help when severe pain is present.

Q: Are people with a developmental disability more prone to certain dental problems?

A: Poor dental hygiene and inadequate dental care can result in unnecessary dental problems for individuals with various developmental disabilities. Such problems include:

A person with a developmental disability may have existing chronic health problems. Having poor teeth and gums worsens the situation; most of these dental problems are very preventable.

Q: How can some common dental problems be prevented?

A: Here is a list of some problems and what you can do to prevent them:

Q: Should a person with a disability brush teeth in a special way?

A: Here is how everyone should brush his/her teeth:

Q: Are there special toothbrushes available for easier use by people with disabilities?

A: Several types of special toothbrushes are readily available. These include:

Q: Why is it so hard to find a dentist who will treat a patient with a developmental disability?

A: It is difficult to find a dentist to care for adults with disabilities for several reasons:

First, not all dentists (and their staffs) have experience working with people who have severe disabilities. Second, not all individuals with development disabilities are "dentist-ready". Some people (with cerebral palsy, for instance) may be unable to cooperate physically in their care. Others may not be willing to open their mouths and allow a dentist to examine the teeth, let alone provide care. As a result, the person may have to be sedated before the dentist can work. If an individual's aversion is extreme, general anesthesia may be required for even routine exams and cleanings. The time required to care for a patient under these circumstances may be two to three times the length of a typical appointment.

Third, the dental bills of many adults with disabilities are covered under Medicaid, with the amounts that are paid being typically less than dental insurance or privately paid fees. Medicaid also won't cover more expensive alternatives. If a tooth is damaged or badly decayed, "pulling it" may be the least expensive treatment. If so, extraction is the only thing Medicaid will cover, even if the tooth could otherwise be saved. Even if a dentist is willing to provide care for persons with disabilities, it is often not be feasible financially or time-wise to see many such patients, without jeopardizing his/her business!

What You Can Do:

1. When you locate a dentist willing to care for your loved one, educate him/her and the office staff to be sure they understand and know how to respond to the individual's disability and behavior. Arrange for your family member to have at least one pre-appointment visit to the dentist's office. This will provide the opportunity to meet the dentist and staff, sit in the chair, see (and hear) the dental equipment and instruments demonstrated, and have the visit explained. This will provide a greater comfort level for all. (Some individuals may require more than one visit.) A visit to the office will also enable the individual with physical limitations to see whether the use of adaptive equipment might allow better access and/or more effective treatment.

2. As far as possible, be sure that the same caregiver goes to the pre-appointment visit and accompanies your loved one on dental visits. Consistency will make visits less stressful for both the individual and the dental team, increasing the chances for regular, effective dental care.

3. Despite the above preparation, some individuals may continue to require pre-visit sedation. If so, be sure that the order is obtained and the medication given at the appropriate time before the dental visit. Continue efforts to desensitize and allow the individual to become less frightened, with the hope that over time, medication or anesthesia will no longer be needed. NOTE: All caregivers should be careful not to communicate their own fears or negative feelings about dental visits to the person with a disability, either verbally (offhand remarks) or non-verbally.

4. Remember that effective tooth brushing, twice daily, is equally important to maintain good dental health. Your family member should use the appropriate techniques and equipment described above.

Q: What special tools or equipment are available to help a person with a developmental disability?

A: Information about available adaptive equipment or assistive technology can be obtained from: Florida Alliance for Assistive Service & Technology (FAAST) 1(800) 322-7881. Another useful source of general information is the Florida Clearinghouse on Disability Information. The toll-free number is 1(877) 232-4968.

Q: What are advance directives and when are they used?

A: This term refers to documents like a Living Will and a Health Care Surrogate designation. These are instructions (directives) given ahead of time (advance) by a person. They deal with:

Every hospital in the Country must, by law, ask a patient to supply them copies of these forms, if they have signed them. In past years, health care providers were a lot more lenient, allowing parents to sign for adult children. Now, hospital risk managers have very strict policies on informed consent. For more information on legal choices and issues please visit the Legal Section by by Clicking Here.

Q: What is required for a person with a developmental disability to give informed consent?

A: Different states have different requirements for informed consent, but they all follow these basic musts.

1. The patient must have enough information to decide whether or not to have the treatment. The information must cover:

2. All of this information must be presented in non-technical language so that the patient can understand it. The health care provider should consider the ability of the patient to comprehend the information. The patient must:

3. In addition, written consent is always required for surgery or other invasive procedures. In this way informed consent protects the patient, as well as the hospital.

Q: How can my loved one and I communicate our wishes in case of a life-threatening illness?

A: There are two related options- making a living will and naming a health care surrogate.

1. A living will allows a person to state which medical measures may be withheld when death is considered inevitable. For instance, a typical living will can prevent doctors from using feeding tubes or breathing devices to keep someone alive when there is no hope of recovery.

2. Naming a health care surrogate means you designate another person (spouse, family member, friend) to make decisions for you about medical care, applying for medical benefits, or transferring from one facility to another. The surrogate only has this authority if you are unable to speak for yourself. This designation can be done at the same time that a living will is written.

In order to use either of these options, a person must be able to give informed consent.