New Horizons Un-Limited Inc.

Guides

Independent Living

Guide to Transitioning to Independent Living

February 28, 2001

The following is New Horizons Un-Limited's Guide to Transitioning to Independent Living. If you have been living in a nursing home and you would like to transition from the nursing home to a more independent living situation or if you are a parent caregiver who would like to plan that your disabled adult son or daughter could move from your home to a more independent living situation, read this guide.

Transitioning to an independent living situation can be a complex and frustrating project. As there are many people and caregivers facing this problem, we are including this guide in the hope it will benefit our readers.

The purpose of this guide is to provide information for people with disabilities who are 18 to 59 years of age, and does not necessarily offer information specifically for the elderly.

New Horizons Un-Limited, Inc. assumes no responsibility in guaranteeing the services, programs or conditions as described. If you are interested in a resource listed below, call or contact the resource to verify the current situation. When using this guide, evaluate the information and make your own decisions.

Guide to Transitioning to Independent Living

To make the transition to independent living, you need to plan well in advance, know your options and plan for the future. Opportunities for independent living are sometimes scarce and solutions to care and housing may be difficult to obtain. Whether or not you are successful in making the transition, you and your family will have the knowledge that you have been able to acquire the best possible independent living situation at this time.

Transitioning from a nursing home, institution or family home can be a formidable task. Many factors must be considered in making the transition to independent living. How you will deal with these factors, the decisions you will have to face, and the choices you will make are as varied as, and dependent on, your individual needs and abilities.

One usually does not begin to look for something until one is at need. It is important however, to consider and investigate your options before you need to transition to independent living, as it may take a long time to get all the variables worked out to make the move to independent living. This is true for any individual situation. Many wish they had started planning years in advance, or at the least, began to consider their options well in advance.

You may enlist many people to help you with this transition such as your doctor, social worker, or disability organization consultant. Each of these people may help you make decisions, however, being informed may assist you in taking an active role in making decisions for yourself.

Many people have not planned for the future. One example is the scenario of the elderly parent caregiver who has taken care of their disabled adult child for the duration of the disabled parent's life. Some do not consider what would happen if the elderly caregiver finds he/she is no longer able to take care of the child or if something sudden and tragic were to happen to the caregiver. Without plans for the future, the disabled adult child may find themselves suddenly abandoned. Perhaps no one is aware of their situation or when found there is no other family member to take on the role as caregiver. The disabled adult may be placed in a situation where they are unprepared for their new environment which may cause great duress for the individual.

The purpose of this guide is to begin to plan for the future by assessing your situation, identifying your needs and identifying the resources you can access to help you in this transition to independent living.

The New Horizons Un-Limited website offers additional guides on some of the needs that are identified below, such as housing and finding a home aide. Our goal is to offer additional specific guides on the options for independent living in the near future. Continue to check our website under the particular topic of interest to you for more resources on each of the independent living needs identified below.

Have you considered all of the alternatives to independent living? Upon evaluating these alternatives, do you still feel independent living is what you are looking and can best meet your needs? Would a group home, adult foster housing or nursing home be better for you? Is Independent Living the choice for you? Be sure to consider all the alternatives to independent living. NHU's Guide to Searching for Appropriate Housing Options describes in general terms some of the alternatives to independent living.

Once you have determined that independent living will meet your needs:

Begin by assessing your situation:

• Check your insurance coverage and assess your ability to pay. This will help you to identify what options are available; whether you will need to look for financial assistance through an agency, service, or whether finding options for independent living privately will best fill your needs.

• If you are seeking financial assistance from the government or your insurance company, check that the care, equipment, or rehabilitation you need is covered. Apply as soon as you can to the government financial assistance program and check whether you will ever actually be served by the assistance for which you apply, or you may end up for many years on a government financial assistance program waiting list.

The following needs assessment is provided by NHU with additional information from the Nursing Home Transition Needs Survey developed by Julie Alexander, Independent Living Coordinator and Advocate of Independence First of Milwaukee, Wisconsin. This is an excellent needs assessment tool. By permission of Independence First, we will soon provide a link to this survey when it is placed on-line. If you are interested in this resource, contact Independence First.

Identify your needs:

• Adaptive Equipment
• Basic Independent Living Skills
• Communication
• Companion or Homemaker Services
• Financial
• Health Maintenance or Rehabilitation
• Health Screening and Care
• Home Health Aides and Nursing Services
• Housing
• Legal
• Mental Health Services
• In-Home Services
• Meals
• Personal Care
• Safety
• Social and Leisure Activities
• Transportation

Adaptive Equipment

• Do you require adaptive equipment for your health, care and mobility needs? These needs will need to be assessed for accessibility in your independent living environment.
• Will insurance cover the cost of this equipment?
• Have you ordered this equipment?

Basic Independent Living Skills

• Have you ever lived independently? If you have never lived independently or you are dealing with changes in your physical or mental abilities, you may want to consider independent living skills training. There are many skills you may need to acquire. Personal care, meal preparation, managing on a budget, scheduling transportation and doctor's visits, taking pharmaceuticals safely, and self direction are some of the skills you can learn through independent living skills training.

Communication

• Are you able to communicate with others?
• Will you need additional training?
• Will you need special telecommunications equipment?
• Will you need adaptive equipment or aides?
• Have you considered the cost?

Companion or Homemaker Services

• Do you require a companion?
• Are there certain homemaker tasks for which you will require help? Some specific homemaker needs may be shopping, meal preparation, and cleaning.
• See NHU's Guide to Finding a Home Health Aide for more information.

Employment

• Are you employed/participate in meaningful activity/day care?

Financial

• Are you able to live on a budget and handle your finances?
• What is your financial or insurance situation?
• Will you be eligible for Veteran's Services?
• Have you transferred your SSI/SSDI income from the nursing home to the community?
• Do you need to seek insurance coverage or government financial assistance for care or housing?
• Have you applied for these funds?
• Do you know when you will receive funding?
• Have you checked whether your nursing home Title 19 funding has been transferred to community funding?
• Do you have a social worker who is assisting you with this transfer?

Health Maintenance or Rehabilitation

• Do you have your doctor's approval for your transition from the nursing home? Consult your doctor to determine your medical needs.
• Are you receiving health maintenance from specialized health equipment?
• Will you be able to visit the hospital to maintain your health or will you need to acquire the equipment to have at home?
• Will your insurance plan cover the cost?
• Will you be able to manage the care on your own at home or will you need a home health aide to help you? Will a home health aide be covered by insurance?

Health Screening and Care

• Do you have your doctor's approval for your transition from the nursing home? Consult your doctor to determine your medical needs.
• Do you have a plan to continue monitoring your health? Will you need a new doctor and dentist? Have you made an appointment? Will your pharmaceutical prescriptions be refillable or do you need to make arrangements for pharmaceuticals prior to the transition?

Home Health Aides and Nursing Services

• Do you have health care needs or will you be able to manage on your own? For a closer look at assessing your health care needs see our Guide to Searching for a Home Health Aide. The Guide covers assessment of your care needs and many options to personal care attendants, not just the home health aide.
• Determine what level of caregiver you require, such as:
  • Skilled nurse
  • Certified nursing assistant
  • Home health aide
  • Home aide or personal care worker

• Have you ever hired health aides, attendants or homemakers?

Housing

• What are your housing needs? Some considerations for housing are:
  • Affordable
  • Accessible
  • Safe
  • Secure

• Locating affordable, accessible housing is another formidable task. Some of the considerations in finding suitable housing depends again on your individual needs. See NHU's Guide to Searching for Appropriate Housing Options. This guide will help you find resources that provide lists of available housing.
• Do you require financial assistance to pay for housing? Have you applied for this assistance?
• Be sure to place your name on the waiting list for the housing complex in which you would like to reside.

Legal

• Knowing your rights to housing can help you face discrimination and other barriers that may surface as you begin to plan your transition.
• You may have legal issues that will require help such as wills, trusts, estate planning.
• There are many organizations that may help with both advocacy and legal issues.

Mental Health Services

• Has your doctor approved your transition from nursing home care?
• Do you require medication, therapy and mental health services? Will you get the support you need to live on your own?

In-Home Services

Meals

• Will you need meals delivered to your home? There are organizations and services that provide preparation and meal delivery.
• Will you be able to afford this expense?

Personal Care

• Will you require support or help for personal hygiene or care? Such as assistance for:
  • Bathing
  • Dressing
  • Toileting
  • Bowel or Bladder
  • Eating

Safety

• Do you have health equipment that requires electricity? Do you have an alternative plan for electric outages? Your local electric company can inform you ahead of time of planned outages.
• Are you concerned that you will lose your ability to call for help in an emergency health situation? Area hospitals offer lifeline services to people in the community.

Social and Leisure Activities

• Do you feel you may need help in finding social and leisure activities in the area to which you will transition? Seek help from family, friends, neighbors, your local Center for Independent Living and area disability organizations.

Transportation

• What are your mobility and transportation needs?
• Do you need assistance transferring from one place to another? Do you use a lift?
• Will you need to arrange alternative transportation for daily living outings such as shopping, doctor's visits or dentist's visits?

Identify your resources:

Identify your resources and begin to gather information from these resources.

• Contact Family and Friends
• Doctor, Hospital, Social Worker
• State and County Health Programs
• Insurance or Financial Resources
• Local Center for Independent Living and other Disability Organizations
• Clergy or Religious Organizations
• Area Agencies on Aging
• Neighborhood Based Volunteer Services
• Local Library or the Internet
• Yellow Pages either online or local telephone book

Contact Family or Friends:

• Would family or friends offer support in your transition to independent living? What areas of support will they provide once you have made the transition? Be realistic when determining what help you want to ask of family and friends.

Doctor, Hospital or Social Worker

• Consult your doctor and/or the nursing home social worker from which you will be released. They will help you develop a plan.

• Social workers that deal with the needs of the people being released may be able to recommend additional agencies and organizations that will fill in your needs.

State and County Health Programs:

If you are over 18 and under 59, you may qualify for coverage through government financial assistance programs. Contact your state and county health and housing departments for these programs. Ask if any of the information is on the internet. Details of the programs may be available through your local library.

• At present in the Milwaukee area there are long waiting lists to be assessed for financial aid through government financial assistance programs. In Milwaukee County, contact the Milwaukee County Department of Human Services, Adult Services Division phone: (414) 289-6660; TTY/TTD: (414) 289-8559 to apply for financial assistance.

• The Milwaukee County Department of Human Services, Adult Services Division brochure states: “Both the COPWaiver (COP-W and The Community Integration Program II (CIP II) provide funding for individuals over the age of 18 who are chronically physically disabled. The specialized funding will allow individuals to live or remain in the community rather than enter a nursing home. These federally funded programs purchase services” (contract area community services) “tailored to the needs of the individual that help with attendant care, chore services, day care, transportation, home delivered meals, adaptive equipment and home modifications. Following an assessment of the individual’s service needs, a case plan is developed and implemented. A case manager is assigned to monitor and coordinate the services to ensure that they continue to meet the needs of the individual.”

  The waiting list to be assessed is now at eight years. If you are on the waiting list and you are called to be assessed, Adult Services recommends that you go ahead with the assessment, even if you are not ready to transition at this time. Do not lose your opportunity to be assessed.

Local Center for Independent Living and other Disability Organizations:

• Your local Center for Independent Living will offer information and self-help for living independently. These centers are located throughout the United States and are organized and managed by people with disabilities. These centers offer independent living skills training, self-help skills, information and referral. To locate the Center for Independent Living nearest you, see NHU's Community and Internet Resources: Independent Living.

• Contact disability organizations, other non-profit organizations, religious organizations or churches that offer independent living skills training, home aid services, meal services, or companion care. If you require state or county financial assistance, you may still be required to go through the state or county assessment to acquire these services from community organizations funded by the state or county.

Clergy or Religious Organizations

• Many religious organizations or churches have outreach programs for people with disabilities.

Area Agencies on Aging

• Agencies on aging often hire the elderly or have a volunteer program for the elderly that may extend services to people with disabilities.

Neighborhood Based Volunteer Services

• Volunteer services may offer a program of care for people with disabilities.

Local Library or the Internet

Yellow Pages either online or local telephone book

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