Lecture # 503:
Independent Living

copyright 2008 Cheryl K. Hosken, BSN, MS Psych.

The concept of independence is a part of the whole rehabilitation process. The unassisted disabled person can be reduced to a condition of infancy if he is not given the ability to grow and mature through making his own decisions. Independence means freedom from unwanted dependence on other people. Vocational rehabilitation is aimed at helping a disabled person to be as financially free as possible. Independent living focuses on self-care (physical self sufficiency) and self-determination (making one's own decisions and determining what to do in life).

There is much positive about the concept of independence, but dependency should not be seen as a negative circumstance. Civilization is based on interdependency for fulfilling social and psychological needs. Love is exhibited by persons comfortably depending on one another. Psychosocial dependency can be a treasured relationship, but what about being physically dependent on others? A disabled person's limited function means that he needs assistance of some sort. At times though, the disabled person may unrealistically reject help from others and put himself at risk for physical injury. On the other hand, a person can succumb to disability and become over-dependent on others. These people do not utilize their potential abilities.

Meditate Word By Word On These Verses:
Gal. 5:13-14.

Let us start with some definitions:
INDEPENDENT LIVING - The ability to do self-care and make decisions about one's life even though the person may have a serious disability.

INDEPENDENT LIVING SKILLS - Skills needed to minimize dependence on others, for example: ability to problem solve, ability to get help if necessary, ability to make one's personal needs known.

ACTIVITIES OF DAILY LIVING - These are activities that a person needs to complete on a daily basis for life: walk with minimal assistance, personal hygiene, dressing, eating, and preparing food. These activities also include living in the community and refer to social, educational, and recreational needs the person may have.

ACCESSIBILTY - This means that a place or activity that disabled persons can attend without having problems of entering doors, concert halls, etc.

ADAPTIVE EQUIPMENT - Any device or mechanical equipment that enables a person to maximize his function.

ARCHITECTURAL BARRIERS - Constructions that limit the free movement of a person with limitations. Examples include narrow hallways, high street curbs, and lack of adequate transportation.

ENVIRONMENTAL MODIFICATIONS - Changes made to obstacles that impede a disabled person from living in a community. Examples are making ramps that lead to doorways, substitution of door levers for doorknobs, cutting down high curbs so that a person can easily go from the street to the sidewalk.

TRANSITIONAL LIVING - A housing program that helps people learn to live independently after they leave the hospital.

CENTER FOR INDEPENDENT LIVING - A coordination office where professional and volunteer staff give advice or referrals to handicapped people so that they may live independently. Services include advocacy in local governmental offices, finding housing, counseling, and finding people to help a handicapped person in the home.

The early idea of independent living services was to provide a wheelchair, special equipment, or modifications to a home. These provided for the survival needs of a disabled person. However, total rehabilitation now includes other kinds of life adjustments such as:

The duration of an independent living program may be ongoing for a person's lifetime or until a person achieves independent living status.

1. Independence is:
(Only one of the following answers is correct.)
a) always the best life style,
b) freedom from physical dependence on others,
c) freedom from unwanted dependence on others.

To find out what is needed for the handicapped person an assessment is done. This is usually done in the home. This is called a situational evaluation. The evaluation is based on the tasks that need to be done at home.

 

 

There are 11 self-care activities that can be rated as a measure of self-independence, based on the amount of physical help needed by the handicapped person. They are:

  1. Eating,
  2. Dressing,
  3. Grooming - washing and combing hair, bathing, washing clothing, brushing teeth, shaving,
  4. Moving in bed - ability to turn self, getting legs into and out of bed, maintaining balance,
  5. Transferring - to and from the wheelchair, bed, toilet, and tub or shower,
  6. Wheelchair propulsion - ability to move oneself about in the wheelchair,
  7. Stair-climbing - ability to go up or down one step at a time,
  8. Food Preparation - planning, preparing, and serving a meal,
  9. Housekeeping - cleaning floors, dusting, washing dishes, shopping, budgeting for food,
  10. Using fine motor skills - turning door knobs or levers, using a lock and key, turning light switches on and off, turning faucets on and off, tuning a radio, operating the phone, writing one's name,
  11. Walking - what is needed to assist in walking, or is he independent?

With each of these activities, we note how much a person can or cannot do. For example, he may be able to put on all of his clothes except for his shoes. What are the alternatives we can offer him to getting his shoes on? Is there a neighbor who can help him? Are there types of shoes he can get on more easily than the ones he has? Does he need to wear shoes all day if he is simply at home and cannot go outside?

We can give a global assessment of ability for personal care that includes other areas:

  1. Independent outside the home,
  2. Requires assistance outside the home,
  3. Completely independent at home,
  4. Requires assistance in the home,
  5. Requires institutional care.

Planning the activities of daily living also includes an evaluation of the person's home or apartment. The list evaluation should include the following information:

  1. The height of the door thresholds (the bottom part of the door frame that rests on the floor),
  2. The width of the doors,
  3. The height of the sinks in the kitchen and bathroom,
  4. The type of flooring,
  5. Stairs,
  6. Ramps,
  7. Elevators,
  8. Lights in corridors and stairs,
  9. Location of house in reference to stores, transportation, and other community offices.

Alterations are as follows:

  1. Ramps - to a house, the incline is 1:12, or 8.33 cm. to 1 meter, with rails on each side of the ramp
  2. Doorways 80 centimeters wide,
  3. Floors without carpets or slick coverings,
  4. Electric outlets should be at least 60 centimeters high,
  5. The kitchen needs to be arranged for maximum benefit of the person who works there. There should also be a list of what appliances the person will need in the kitchen.

If at all possible, the energy of the handicapped person should be preserved. Therefore, if there is a way that he can sit to do a task, we should try to help him do so. If objects are slid rather than carried, energy is also conserved. There are tools available at the rehabilitation centers in Moscow that have large handles for grasping. This helps the person with decreased motion in his hands to work easier. In case you are interested in the international standards for accessibility, you can find them on the Internet.

2. What is a home evaluation?
(Only one of the following answers is correct.)
a) checking to see if the apartment is clean,
b) checking for what is needed in the home to make life easier for the disabled person,
c) installing lowered light switches.

 

 

Adaptive Devices
These are a variety of technical, computerized aids, special equipment, and environmental adjustments to overcome the limitations that result from disabilities. More sophisticated technology includes the usually prosthetic (replacement for a lost extremity) and orthotic (a brace that stabilizes an extremity to a normal position) devices, adaptive driving mechanisms, and rehabilitation engineering systems. For example, there are computer systems to help the blind work in bookkeeping, computer chips that now control the stability of a prosthetic leg, and whole house systems that control lights, heating, ventilation, and security with a push of a button.

Adaptive devices provide are necessary to provide greater independence or increase the effectiveness of the body. These devices need to be prescribed according to the individual and his needs. For example, if a child with cerebral palsy cannot control his hands, there is no need to fit him with a wheelchair that needs to be driven by hand. Perhaps a mouth control needs to be devised for this child.

When there are modifications of equipment, it should also be usable for non-handicapped persons. For example, the redesign of a wheelchair ramp may appeal to many people instead of the use of steep stairways. The devices also need to be aesthetically pleasing. If they are ugly in appearance, they may be put in the garbage. Durability and reliability are also important. If the device breaks frequently, it is more of a problem than a help.

Support Services
Support systems are designed for a broad range of people, not just the handicapped. These services are to maintain people in their own home and enhance their daily lives. This is one of the goals of Agape Rehabilitation Society.

There are many people who may come into the disabled person's home to give him the ability to live and stay at home. As we know, institutional care is difficult for the people who live there and difficult for the staff. If we can bring professionals and other people into a home for short periods of time, usually the disabled person feels safer. Professionals that may visit are nurses, physical and occupational therapists, recreational therapists, homemakers, chaplains, dentists, volunteers, beauticians, and social workers. Some churches have summer projects of making home repairs for the elderly and poor in their congregations. In Ioshkar-Ola, Russia, the ladies of the church helped our friend by coming to her house and putting up new wallpaper and making new curtains.

All types of people can be of help to the disabled person. For example, a homemaker may come into the house to do one or more of the following jobs: house cleaning, personal care of the disabled, food preparation, laundry, and shopping for needed items. There are also a variety of volunteers to provide their cars for transportation, telephone the disabled person daily, do household repair, do yearly heavy cleaning, and food shopping.

Question:
3. Is it important for a disabled person to live in his own home? Why?

 

 

A personal assistant is a paid employee who comes every day to give in-home care. The assistant reduces the burden of psychological and physical burdens the family has in caring for a disabled person 24 hours a day. The needed amount of attendant care varies depending on the age, physical disabilities, and the ability of the family to cope. For example, if a mother works all day to support her disabled child, perhaps a grandmother or neighbor cares for the child during the time she is away from home. Or a disabled person may need help just in the morning to get up and get dressed.

For those of us who want to do this type of work, it is important that an agreement be made about the amount of time and the duties of the personal assistant. Our work needs to be carefully done with a good attitude. We need to be honest in everything we do. If difficulties arise, the manager of the personnel needs to mediate the dispute.

Housing
Suitable housing in the community in your country may be difficult, however, there are some gains being made. Sometimes, churches help their members to make housing more accessible or act as an advocate to help a disabled person get a different apartment. It has been reported to me that the Moscow organization "Perspective" is gathering funds from the West to build a model apartment home for independent living. While this type of housing is beyond the reach of most people, if the model exists, it can be an example to others in Russia who are in charge of housing.

In Europe, there are a few cities in various countries that are barrier-free for handicapped persons. The best known is in Holland and is called Het Dorp. It is a model for other European countries that are trying to build handicapped housing for the disabled persons. All of the housing and transportation is barrier-free in this city. Most housing for handicapped persons is impossible for them to purchase due to their low income. For this reason, governments have made laws that new housing must include apartments for handicapped persons. Other governments have converted hospitals or government buildings into apartments for able-bodied and handicapped persons. Because handicapped persons are given the same rights to live in these types of housing, they are not isolated from the rest of society.

The desired living situation of most disabled people is a place in the community where they can live independently in their own housing. Housing design places restrictions on where they can live. In Russia, it is great when a disabled person can live in an apartment house with a large elevator or on the first floor. Unfortunately, this is not an option for many people. Location, transportation and ability to buy food nearby are important considerations for the disabled person and his family.

Although housing resources are largely the consequence of political priorities, we can help by advocating for various types of housing in the local governments. Local governmental groups for disabled may be able to put some pressure on local housing authorities to help elderly and handicapped persons, especially in new housing units.

Question:
4. Housing is a big problem for people in many countries. Can you think of ways to help disabled persons live easier lives in their home in your country?

 

 

Accessibility
This concept is fairly new in the West. In the U.S., legislation was not passed until 1965 that provided for uniform specifications for making buildings, streets, and transportation usable for persons with limitations. For many years, the isolation of disabled persons and a lack of public awareness about the lack of mobility for the disabled resulted in very little interest in making changes in cities and streets. To overcome this problem, the Congress of the U.S. and groups representing handicapped persons began an intense educational campaign to make the rest of society aware of accessibility issues. In 1973, plans were adopted to gradually begin improvements in barrier-free housing, transport, and streets.

The United Nations Barrier Free Design Committee states that environmental barriers to buildings are elements in their design that cause no difficulty for a normal, unencumbered, able-bodied adult, but such design can exclude the entrance of aged, children, pregnant women, mothers with children, those that suffer from weak heart of lung capacity, as well as those who have other obvious physical impairments.

These barriers can include the following:

Suggested building modifications may include:

The international symbol of access, a blue and white profile of a person in a wheelchair has been adopted to indicate facilities that are designed to accommodate those who are disabled. The cost of designing such buildings usually is 1%, but the cost of building such housing or other buildings is at least 5%. These figures may have increased in the last few years due to higher costs of building.

Question:
5. What types of barrier-free design have you noticed in new buildings?

 

 

Rehabilitative Recreation Handicapped persons want to live fulfilling lives just as non-handicapped persons do. They need to utilize the intellectual, emotional, physical talents, and their own personalities. Most persons with disabilities are more normal than abnormal in that they have a body, intellect, personality, and a range of emotions. But they are limited in what they do and how they spend their time.

Leisure is the time people have after they complete their work as well as eating, sleeping, and other essential tasks. Most people can use this free time as they please, however this is not always possible for disabled people even though they have an excess of idle hours. Leisure is a time for pleasure and expanding one's life and it is done by choice. The opposite of leisure is idle time, which is boring and not useful.

Recreation is leisure activity that uses mental or physical participation. Passive or non-participatory use of leisure time such as watching a movie or a football game is called amusement. Activities that renew the mind or body are re-creative and may result in new friendships and the discovery of new personal talents. Re-creation is refreshment of the body and mind from work, ennui, or frustration.

6. Recreation is:
(Choose the best answer.)
a) making craft items,
b) learning new mental and/or physical skills,
c) playing video games on the computer.

 

 

Recreational activity is a diversion from the usual daily routine. Feeling of being confined by routines and special physical care, are overcome by diversional activities. Virtually any human experience can be re-creative when it satisfies some need - companionship for the lonely, rest from fatigue, or work projects. There are art forms to explore, nature studies, dramatics, games, and physical fitness.

Usually, we think that disabled persons have much leisure time, but this may be an erroneous conclusion. To see how little leisure time they really have, we need to be aware of (1) psychological barriers created by attitudes toward the handicapped, (2) physical, perceptual, or temporal limitations of the person, (3) limited choices of leisure experiences available - these may be due to personal background, living environment and community resources.

True leisure is an awareness of the freedom to use disposable time as one pleases. For most people leisure is freedom from obligation for a limited period. For handicapped people, there may be unending freedom from obligations and restricts the activities a person can do if he really has free time. Leisure for anyone occurs when there is genuine freedom of choice. The handicapped person needs a diversity of re-creative options from which to choose. The ability to use leisure is learned. Many disabled people are not even aware that they can relax with an interesting activity.

If you have a client who wants to attempt some recreational activity, you can evaluate it by these determinations:

  1. Analyze the proposed activity to determine if it can be done with the person's physical limitations, strength, perception, and endurance.
  2. Talk with the disabled person to find out what specific part of the activity is satisfying.
  3. Be certain that the activity does not affect the person's health negatively.
  4. Determine if adaptations must be made for the activity.

In some cases adjustments can be made so that the disabled person can participate in physical activities with able-bodied persons. A person sitting in a wheelchair can compete with able-bodied persons in archery. Wheelchair basketball is a team sport that can be played by disabled persons only. It is a popular sport for wheelchaired persons throughout the world.

Sometimes there will be moments of frustration, anger, and hostility when a person tries to do something new. We can help the person to understand that these emotions can be used as personal growth experience. They may learn how to control their anger or to leave anger behind and pursue the goal they want in a sport. The benefits from a recreational program for the handicapped are these:

7. Recreation helps a person to grow by:
(One or more of the answers may be correct.)
a) giving him challenges to overcome,
b) exercising his mental capabilities,
c) encouraging risks.