Health Care Planning for the Future

• appropriate communication from health care professionals takes into account the functional status, the emotional state, and the language ability of the person with a developmental disability. It also considers ongoing communication with the distant specialists.
• person or family-centered care should place your family's needs above those of the health professional and the health care system. Tailoring the scheduling of a doctor's visit or treatment to meet your loved one's routine, or your available time, might be an example.
• comprehensive and continuous care to assure familiarity of health providers with your family member is widely sought after by many patients. This means always seeing the same doctor, therapist, etc., when he/she goes for a visit. But, the use of specialists, group practices, and particularly managed care, all work against real continuity of care. To achieve comprehensive and continuous care in the face of these health care realities means that someone must coordinate and transfer information between, and often among, health care providers. A support coordinator can fill that role, but more often the family caregiver is called upon to do it. To help you manage this, it is important to keep a record of all health care information and services (see the forms section for some ideas and methods of recording). Recording these facts now should be part of any future planning you may do.
• community based means the ability to give needed medical services in the patient's own community. If your family member ever has to go to a distant medical center, the local physician must have ongoing communication with the distant specialists.
• individual and family empowerment means that your family member and you should be respected as equals in the health care relationship. Since doctors and other professionals ultimately come and go in the life of the person with the disability, it is you and your family- who will be there throughout the course of a lifetime - who must be advocates for your family member. You and your loved one should be allowed to make your own health care choices.

These are some of the common age-related changes that happen to everybody, including most people with disabilities:

* Vision loss - More light is needed to see; glare becomes a problem. Words less than 12 inches away are more difficult to read and sharpness declines. Cataracts may occur and cloud the lens. Bifocals may be needed.

* Hearing loss - Sounds at low levels or at high pitch are impossible to hear. Words run together; some sounds are totally lost. A hearing aid may prove helpful.

* Changes in the bones and muscles - Joints become stiffer, bones are weaker & more brittle; osteoporosis may occur. Body fat replaces muscle cells, causing a decrease in muscle tone, strength, and stamina.

* Changes in the heart and blood vessels - The heart muscle is no longer as strong and doesn't use oxygen as well. Lack of exercise makes this worse. Blood vessels gradually thicken and harden, causing the heart to need more energy to pump blood. Over time, this results in high blood pressure.

* Changes in breathing - The lungs weaken and are less elastic. Breathing becomes more difficult. Less air is exhaled, leading to less stamina.

* The digestive system - Food is harder to swallow and digest because the entire system slows down. This leads to constipation, gas, heartburn, etc.

* Drying, thinning, and itching of the skin - Less elasticity & fatty tissue beneath the skin leads to wrinkles, sagging. Avoid overuse of soaps and detergents. Skin tears and abrasions are common. Moisturizers give temporary relief from dryness, itching.

* Changes in the temperature-regulating mechanism - Means less sensitivity to heat and cold. Supervision is needed to avoid burns, heatstroke, etc.

* Less ability to control blood sugar levels - May result in Diabetes, especially after age 70. Avoid obesity; eat smaller, more frequent balanced meals.

* Changes in sleep patterns - May awaken earlier in mornings; sleep less at night. Daytime naps with advanced age are common for some.

Do People with Down's Syndrome have any special problems as they age?

Individuals with Down's Syndrome differ from the general population and from other people with disabilities as to WHEN they begin to age and HOW they are prone to certain problems. Generally speaking, a person with Down's Syndrome:

1. Ages earlier & at a faster rate than the general public - After reaching late thirties to early forties, the individual may look 15-20 years older than his/her chronological age.

2. Is at a higher risk for having thyroid problems - 20-30% of adults will have changes in thyroid function. Untreated it can eventually result in hallucinations and coma. However it is treatable with thyroid medication.

3. Is susceptible to Sleep Apnea - People with Down's Syndrome are prone to sleep apnea because of weak neck muscles and drooping tongues. As the person sleeps, the tongue falls backward and blocks the airway. If this occurs, breathing stops. That will cause the person to waken or move, opening the airway again. If this is repeated during the night, deep sleep and real rest are never achieved; the person will be listless and sleepy the next day. Over time, if left untreated, sleep apnea can result in congestive heart failure and other heart and breathing problems. It should not be ignored.

4. May develop bone & muscle problems - Decreased muscle tone, neck vertebrae, hip subluxations, and scoliosis are all common and and will impair mobility. 90% also have bunions that cause pain and impair balance & ambulation. These are easily treated by a podiatrist.

5. May develop cataracts (50%) - Unlike in the general population, these should be removed when discovered. Any delay can result in functional decline.

6. Is more likely to have a hearing loss - From repeated ear infections that are so common in childhood. These may occur as early as the twenties & worsen with age.

7. Has premature aging of the immune system - Will be more susceptible to infections; diseases like Leukemia are more common.

8. Is at a greater risk for Alzheimer's Disease - 40% will develop the symptoms of Alzheimer's. It occurs earlier than in the general population, often in mid-50's.

These conditions are not part of normal aging; they are disease-related and need to be diagnosed and treated. Unless a doctor has experience with patients who have Down Syndrome, he/she may not be aware of these possibilities. Be prepared to educate him/her about the tendencies to develop the conditions described above.

Do People with Cerebral Palsy have any special problems as they age?

Overall, individuals with Cerebral Palsy seem to be at risk of becoming more dependent with age. Therefore, it is important to know what kinds of adaptive equipment or assistive technology is available and appropriate, as well as how your loved one may obtain it. These may include both "low-tech" equipment & supplies for incontinence and skin protection, as well as "high tech" computerized devices for mobility & communication.

Do you know what "advance directives" are and how they are used to appoint a health care surrogate or document living wills? Are you familiar with terms like "informed consent", "health care surrogate" and "living will", and how they pertain to your loved one? If your answered NO to any of these questions, go to the Health Care "Definitions" section by Clicking Here.

If you understand all of the health care information presented in this section, go on to Step Three and test your knowledge by Clicking Here.

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