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Providing support for a person with significant developmental delays, involved medical needs, or the frailty of age can be challenging. Often the need for 24 hour supervision and care means that several individuals must coordinate their efforts. These efforts routinely include daily routines such as feeding, bathing, dressing, and the like. But this is only the "tip of the iceberg".
Families and care providers who set out to provide residential home-style care must be sensitive to the goals of their efforts. In the past, in large institutional settings and nursing homes, the focus had been the "medical model". That is to say that having a nursing staff to evaluate health needs and possibly a nutritionist to evaluate food consumption, were the primary focus of the administrators. Secondary concerns included physical therapies, mobility issues, and behavioral problems.
Over the past 20 years, a more broad-based or "holistic" approach has been conceived and developed. A wide range of studies have increased the awareness of the need for human interaction, both in the areas of personal assistance, and directed towards social-emotional well-being. It is now recognized that even the most supportive and sympathetic approaches to dealing with personal care and hygiene issues may not be enough to insure the best quality of life.
Community integration has been touted as the best possible scenario for someone who requires this level of care and attention. Opportunities to see and explore the world around us, work and play side-by-side with our peers, and form deep and meaningful relationships is all a part of this bigger picture. Indeed, as I have trained staff over the years, I have often encouraged them to put themselves into the shoes of their clients. What would life be like, surrounded by four walls with no windows? This image of imprisonment is exactly what has become all too real for those still trapped in institutional settings. There may be a day room, a dining room, a patio, and a bedroom, but is this anyone's idea of being in the real world? Of course not!
We expect to be able to prepare ourselves daily to participate not only in the daily routines of our homes, but to go out into our community whenever we deem it necessary to do so. This element of care is often overlooked or even ignored. Inconveniences such as feeding schedules, medicine regimes, wheel chairs, behavioral issues, and other barriers to integration are often seen as insurmountable. Worse yet, they are sometimes seen as not "cost effective".
If you are a care provider or family member who will be responsible for the well-being of another, you must consider these elements of care. Planning, in advance, is the key. For instance, if you wish to take an elderly person to a senior center or some other social event in the community you need to be aware of some key points:
1)What is the physical tolerance of the person you are caring for?
This concern must address limitations brought on by medicines. Drowsiness or other side-effects must be taken into account. When will be the best time of day to make the experience both comfortable and worthwhile? When are scheduled meal times and can these be altered? Can the person you are caring for walk long distances? Will there be environmental obstacles such as excessive noise, visual distractions, or pollutants in the air that might cause discomfort?
2) What are the physical limitations of the person you are caring for?
You must know your community well. Determining what is accessible, in advance of outings will make them less demanding and therefore less frustrating to you and your charge. Will there be waiting lines? Can you set appointments or make arrangements to bypass situations where waiting is involved? Are there ramps, elevators, or other systems to insure accessibility? Do community resources offer special considerations for someone who is visually impaired, hard of hearing, or cannot ambulate independently?
3) What are your options for transportation?
Is accessible public transportation available? What are the schedules like? Will you need to purchase a wheelchair van to accommodate frequent excursions into the community? Can you walk to nearby community settings? This is often one of the greatest obstacles to integration.
4) Are community settings appropriate for true integration?
Will the person you are caring for be directly involved in the activities you have planned? Are these activities isolated from other persons or will there be opportunities to "mingle"? Are these activities age-appropriate? Has the person you are caring for expressed an interest or shown some motivation for returning to these places. It is very important that the outcome is participation and socialization. Without these elements you may find your partner more inclined to stay home.
It cannot be stressed enough how important it is to plan in advance for routine and special outings. For some, changes in routines are cause for behavioral issues. Planning should, if possible, include the person for whom you are planning. Allowing him or her to choose a destination, reminding them of upcoming events, rehearsing skills necessary to insure involvement, even choosing an outfit to wear, in advance of your excursion, can contribute to a more successful outcome.
Finally, I would say, this element of personal care cannot be overlooked. Excuses for not getting out are easy to come by for many care providers. Yet, they, themselves, will leave the care setting at some point to go home, go to the store, take in a movie, shop, visit relatives, and so forth, without a second thought. Persons with disabilities or constrained in some ways by age, are no less attuned to the simple pleasures in life if given the opportunities to experience them.
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