GOING HOME:
A GUIDE
TO
NURSING HOME
TRANSITIONING
©2005
RRTC on Independent Living Management
3108 Main Street, Buffalo, N Y 14214
a member of the Western New York Independent Living Project, Inc.
family of agencies
Permission is given for duplication or reproduction either mechanically or electronically
of any portion of this manual, providing that the following credit is given:
Reproduced by permission from materials developed by the Rehabilitation
Research & Training Center on Independent Living Management (RRTC-ILM).
This is a publication of the Rehabilitation Research & Training Center on Independent
Living Management which is funded by the National Institute on Disability and
Rehabilitation Research of the US Department of Education under grant number
H133B000002. The opinions contained in this manual are those of the grantee and do
not necessarily reflect those of the Department of Education.
2
GOING HOME:
A GUIDE
TO
NURSING HOME
TRANSITIONING
3
Contents
Introduction
Initial Meeting and Planning
The Olmstead Decision
Independent Living Philosophy
Assessment
Finances
Support Services and Programs
Transportation
Housing
Overcoming Barriers
Conclusion
Additional Resources and Information
Appendices
Assessment Instrument
Home Modification Contractors
Moving Companies
Vehicle Modifications
Clothing, Furniture and Household Goods
Subsidized Housing List
Independent Senior Citizens Housing
4
Introduction
This manual outlines a basic framework to help break the cycle of institutionalization. It
provides some of the necessary tools for accomplishing this goal. State-run institutions
are filled with individuals who simply do not need to be institutionalized. Many who enter
a nursing home for rehabilitation do not come out. There is no reason and no excuse for
this. In many cases, the option and legal right to receive services in the community is
never explored. When faced with adversity, de-institutionalization plans are abandoned,
leaving the individual isolated from mainstream society and ultimately institutionalized.
Quality of life is negatively impacted as these individuals become dependent on a
system that affords them few choices in how their own life is run.
5
Initial Meeting And Planning
Your initial meeting with the consumer is the first step in developing a plan to meet the
consumer’s goals and determine what supports and services the person will need in the
community. The initial meeting offers an opportunity to get to know each other and
begin to gather background information that will be used in the transition process.
It is very important to clearly explain your role and the consumer’s role in this process.
This process is about the consumer. Consumers must understand that these decisions
affect their lives. So, they must take an active role in this process.
The initial meeting provides a good opportunity to explain the independent living
philosophy and the Olmstead Decision and it’s implications.
6
The Olmstead Decision
The Olmstead Decision of 1999 affirms the right of individuals with disabilities to receive
services in the most integrated community-based settings appropriate for their needs.
Two Georgia women whose disabilities included mental illness and mental retardation
are responsible for the Olmstead case. At the time the suit was filed, both women lived
in state-run institutions, despite the fact that treatment professionals determined that
they could be served in a less restrictive, community setting. The lawsuit asserted that
continued institutionalization constituted a violation of their right under the ADA to live in
the most integrated setting appropriate.
The Supreme Court ruling states: “Unjustified isolation…is properly regarded as
discrimination based on disability.” This ruling recognized that “institutional placement of
persons who can handle and benefit from community settings perpetuates unwarranted
assumptions that persons so isolated are incapable or unworthy of participating in
community life,” and that “confinement in an institution severely diminishes the everyday
life activities of individuals, including family relations, social contacts, work options,
economic independence, educational advancement, and cultural enrichment.”
Under the Supreme Court’s decision, states are required to provide community-based
services to persons with disabilities who would otherwise be entitled to institutional
services when: the state’s treatment professionals reasonably determine that such
placement is appropriate; the affected persons do not oppose such treatment; and the
treatment can be reasonably accommodated, taking into account the resources
available to the State and the needs of others who are receiving State-supported
disability services. The Supreme Court cautioned that nothing in the Americans with
Disabilities Act (ADA) condones the termination of institutional settings for persons
unable to benefit from a more integrated setting. The court also stipulated that once it
does provide community-based treatment to qualified individuals with disabilities, its
responsibility is not unlimited. This ruling that “unjustified isolation…is properly regarded
as discrimination based on disability” reinforces the ADA, applicable to this decision,
which states that “states are obliged to make reasonable modifications in policies,
practices, or procedures when the modifications are necessary to avoid discrimination
on the basis of disability …”
If an individual is qualified and wishes to receive services in the community rather than
in an institution or nursing home, hospitals are expected to make discharge placement
efforts referring the individual to appropriate community-based services. Hospitals are
required to consider and actively pursue post-hospital placements in the least restrictive
setting. Placements should be appropriate for each patient’s needs. Individuals
discharged to home care, adult homes and other community-based settings must be
discharged to licensed agencies or facilities approved to operate in your state, such as:
 an adult home with the provision of any needed services, or
 the consumer’s own home with the provision of home health care and/or
personal care services.
7
8
Independent Living Philosophy
Discussion of the independent living philosophy is important because it helps define the
relationship and roles that you and the consumer will play in the transition process.
Consumers must understand that your role is to assist and guide, not to do everything
for, them.
Special care needs to be taken. In many cases, when individuals have been
institutionalized for a period of time, they are used to having things done for them. Some
have been discouraged from doing things for themselves. Part of assisting individuals to
achieve independence again includes requiring them to think and make decisions for
themselves. This planning process must balance assisting the consumer and
empowering them to continuously play an active role in their own transition. Successful
transitions only occur when consumers are motivated and involved.
It is important that you do not give the consumer false expectations about your role.
Each transition process is different. It is difficult to predict what obstacles will have to be
overcome.
For every problem you encounter, there is a solution. It is up to your transition team and
the consumer to figure out what solution will work.
9
Assessment
One of the first steps in developing a successful transition plan includes an initial
assessment and evaluation. The goal of this stage is to develop a clear understanding
of the consumer’s current situation. You will want to develop a “snapshot” that includes
what, who, why and where.

What is the consumer’s goal?

Who is going to be involved?

Why is the current setting inappropriate?

Where does the consumer want to go?
You want to develop a clear understanding of the consumer’s goals and potential
barriers to reaching those goals. When developing the consumer’s goals, begin to focus
on what services or supports will be needed to achieve them. Some sample questions
to address during the assessment period include:

How long have you been living here?

Where were you living before you moved here? (If the consumer is in the
hospital, where were you living before your hospital stay?)

How was that working out?

What type of residence were you staying in?

Were you living with anyone?

Did they assist you in any way?

Do you have a home or apartment to return to? Who (if anyone) has been taking
care of it for you?

Where do you want to live?

Would you prefer an apartment? a single family home? an assisted living center?
etc.

What was the reason for your move to the nursing facility or hospital? Was this
to be short term or long term?

What type of services and supports do you receive here?
10

What type of supports and services would you need in the community?

What type of supports and services would you want in the community?

Have you discussed moving with your family, friends, or medical staff? How do
they feel about this?
With the consumer’s consent, it is important that you talk to all involved parties,
including social workers, medical staff, and family. This often helps create a more
complete picture of the situation. When talking to others about the consumer, keep an
open mind. Remember, your job is to assist the consumer. Often, there is a huge bias in
the medical and social work profession to err on the side of caution.
In some cases, for the person’s health and safety, it is imperative that they remain in a
skilled nursing facility or hospital setting. However, in far too many cases, what is
prohibiting a person from living a more productive and rewarding life in the community is
the fear, ineptitude, lack of knowledge and just plain indifference of the very people
entrusted with the consumer’s health and well-being.
11
Finances
Before exploring the consumer’s income or discussing the income that will be available
upon discharge into the community, you must verify that the consumer’s current
institutional placement is being paid for. Most health insurance policies and Medicare do
not cover nursing home care after a certain length of time. It is the responsibility of the
facility to recognize this and make proper adjustments. But, this does not always
happen. It is important to make sure that the current bills are being covered.
Medicaid is often the best option for any extended nursing home stay or if aid service is
required. In some states, Medicaid coverage is retroactive and will cover the cost of
nursing home care three months prior to the date that the Medicaid appointment was
made (pending approval of the application). This is important because in cases where
an individual has been residing in a nursing facility with no insurance, they still may be
entitled to coverage. For example, if an appointment was made on June 15 and the
individual is approved for Medicaid, his or her coverage will begin on March 15.
For instance, an individual contacted our agency when they were suddenly confronted
with a bill from a local nursing home. The individual had been receiving care for just
over six months and had assumed their insurance was covering the stay. In fact, their
insurance had only covered one hundred days and the remainder was being billed to
the individual. This was not properly explained and the family was shocked to learn that
they owed over $10,000.00. When they contacted our agency, an application to
Medicaid was made immediately. Once approved, Medicaid coverage overlapped with
the individual’s private insurance and this outstanding bill was paid.
There are strict income limits to qualify for Medicaid. In some cases, a “spend down” is
necessary. For example, if an individual currently has an income of $800 per month and
the income limit for Medicaid is $670 per month, Medicaid would keep the difference. In
this case, the individual would have to “spend down” $130 every month. A person’s
resources may also be affected. Under Community Medicaid, a single individual is
allowed to possess $3,950 in resources, with the exception of a burial account, home,
car, health insurance premiums and support payments. When a significant amount of
resources is affected, it is important to examine what services are needed and the cost
with and without Medicaid. Some costly services that Medicaid can cover outside a
facility include: aid service, wound care, home modifications, durable medical
equipment and prescription coverage. There are other services as well.
The next step is to determine the consumer’s income and the sources of that income. Is
the consumer currently receiving SSI or SSD? In many cases, an application was never
submitted or the case was forgotten after an initial application was denied. Remember,
applications are routinely denied. It may be necessary to appeal a number of times. It is
important to track these appeals closely with routine follow-up. Letters from a physician,
social worker and family members who support your consumer’s case will be included in
the application file and taken into consideration by the reviewer. Follow-up telephone
calls and inquiries are also important and will help keep the case from being lost or
12
forgotten. A friendly call to touch base with the case examiner or reviewer keeps the
case fresh and also lets the examiner or reviewer know that an outside agency has an
interest in the outcome.
This process can take time. Temporary assistance from the local social service office
can help if the consumer is not eligible, does not want to wait for SSI or SSD benefits, or
is planning to return to work. If a consumer has no income, cash assistance and food
stamps can provide enough to live on. This situation is best paired with subsidized
housing where rental charges are based on income. This is a temporary fix, however.
Some counties limit public assistance to a certain number of months.
An important catch to this route is that a person residing in a skilled nursing facility is
unable to apply for food stamps or cash assistance. While they are residing in a skilled
nursing facility, it is assumed that all needs are being taken care of. Once discharged,
an individual must wait 45 days for the application to be processed. This poses a
significant problem. However in certain cases, with the proper documentation, the
application can be processed while the consumer is still in the skilled nursing facility. In
this way services can be in place upon discharge.
Important Telephone Numbers:
Supplemental Security Income (SSI) 1 800 772-1213
Medicare 1 800 633-4227
General Medicaid <local Medicaid number here>
Medicaid Nursing Home Division <local number here>
Medicaid CASA <local number here>
Support Services and Programs
One of biggest reasons for confinement of an individual in a nursing home is to receive
rehabilitation and medical treatment. Many times, this same treatment can be provided
just as effectively and much more economically in an individual’s own home. There are
many agencies and programs designed to provide this type of care.
Private health care providers, as well as Medicare, do cover certain services and
procedures. Medicaid has a Nursing Home Division that deals with individuals in longterm care residing in nursing homes and hospitals. The Community Alternative Systems
Agency (CASA) is another division of Medicaid, which works with individuals in assisted
living arrangements and home care.
The facility’s discharge planner and social worker can be valuable resources during the
implementation of this phase. It is important to have someone who can coordinate and
facilitate the various aspects of this process.
Many state and federal programs can assist in a person’s transition. The more agencies
and individuals that are involved in a person’s transition and support network, the more
13
options there are. If the consumer has a mental diagnosis, there are programs available
for assisted living, work, and counseling. If they have vision impairment, contacting the
Center for the Blind and Visually Handicapped can offer solutions. If they have a
developmental disability, exploring service coordination may provide funding for
housing. Even if you do not find exactly what you are looking for, asking questions can
often lead you to someone who can assist you.
Food Stamps <local number here>
Verizon Lifeline <local number here>
Personal Emergency Response System <local number here>
Vocational Rehabilitation Services Office <local number here>
Developmental Disabilities Service Organization <local number here>
Senior Companion Program <local number here>
Grocery Delivery <local stores and their phone numbers here>
Meals on Wheels <local offices and their phone number here>
14
Transportation
Transportation plays a vital role in allowing an individual freedom of movement and the
opportunity to explore their own interests. This is important to an individual regardless of
their current living situation. Most counties provide some form of accessible public
transportation.
Many public transportation services provide curb-to-curb para-transit service for people
with disabilities who have been certified as functionally unable to use accessible bus
and rail systems.
Other options include public transportation, wheelchair van services, and services
offered by independent living centers. Using public transportation for the first time may
be intimidating. Plans should be made to familiarize the consumer with the system, by
accompanying them on their first trip.
Local Para-Transit <local number here>
Independent Living Center Transportation <your CIL number here>
County Department of Social Services Transportation <local number here>
City/County Division for Senior Services <local number here>
Discount Card for Seniors <local number here>
15
Housing
Finding accessible and affordable housing is often one of the most challenging aspects
of transition to the community. It is important to identify the type of housing the
consumer is interested in early on and to begin to gather information as soon as
possible.
Does the consumer have his own home to return to? If he has his own home, who has
been taking care of the property? Have the bills been paid? What modifications will
need to be made to the interior or exterior of the building? Does the consumer have a
social network of family and friends? Or, will he be alone? Will he need assistance or
aid service? These are some of the issues to address.
If the consumer has been institutionalized for a length of time, they may not have a
home to return to. In this case you must be creative and look for available housing. If
the consumer is interested in subsidized housing, obtain and fill out the applications as
soon as possible. For those people on limited funds, subsidized housing is often the
best option. Besides being affordable, they also place the consumer in an environment
conducive to establishing a social network. An apartment complex with numerous
apartments allows the consumer to interact easily with neighbors and provides some
safety.
Due to the lack of accessible housing in most areas, there are usually waiting lists. You
have to be flexible in this area. Do not apply to just the “ideal” housing complex. Apply
to all housing that interests the consumer. In this way, the consumer will have more
options down the road. It is important to follow up on all applications with a letter and
phone call. Establishing a relationship with property managers will allow you to stay on
top of apartment availability.
Do not limit the search for housing strictly to subsidized housing lists. Make use of local
newspapers and the Internet. As you travel, notice “for rent” signs. Ask questions. If an
apartment complex does not have what you are looking for, ask if they have any
suggestions. You will be surprised at how quickly you can get the word out.
Housing Subsidies
Many communities offer some form of subsidized housing. Section Eight vouchers
are also available. <Insert more information about housing in your area here.>
<list local housing organizations and telephone numbers here>
16
Overcoming Barriers
There are many potential barriers and setbacks you will encounter during the transition
process. The trick is to identify as many potential issues as quickly as possible and act
to resolve them.
Clear and open communication is imperative to avoid any unexpected setbacks later on
in the transition process. It is a crushing setback to have everything in place only to find
out at the last minute that utilities cannot be turned on until a large past bill is
addressed. Early on, it is imperative to discuss all outstanding debts or bills, as well as
any negative relationships with social services or health care providers.
When you discover a problem, try to work with the agencies before working against
them. Many times, a payment plan can be arranged. Social Services can also be of
valuable assistance in helping to cover some costs such as past rent, moving costs or
security deposits. Be creative in your problem solving.
Sometimes the only solution is the one no one else has thought of yet.
<list legal services, local utilities and social service organizations and telephone
numbers here>
17
Conclusion
With a good understanding of the independent living philosophy and the proper attitude,
you can help folks get out!
For any transition to be successful, it must be approached with the proper attitude and a
complete understanding of the independent living philosophy. You must believe that
every individual, regardless of disability, has the right to live in the community.
Work with the system when you can. Work around and through it when you cannot. Be
creative! When you encounter a unique obstacle, develop a unique solution. If you hit a
wall, ask to speak to a supervisor. Be persuasive and logical in your arguments. Do not
be afraid to enlist the help of other agencies. It is amazing how a call from a local nonprofit law firm or reputable agency can support your case. Neighborhood Legal Service
and Legal Aid for the Elderly can be valuable tools. An impartial administrative law
judge at a fair hearing can overturn unfavorable rulings.
Establish a network of contacts. When an administrator or examiner approves a request
of funding for a ramp or provides the security deposit for rent, let them know the impact
of those decisions. Call them back. Let them know that with their help, a person’s life
was changed. The next time you need help, they may just make life easier for you.
Above all, be diligent and creative. The bottom line is - IT CAN BE DONE!
18
Additional Resources and Information
There are many valuable resources available on the subject of deinstitutionalization.
The following is a select list of web-based resources. Some may take a bit of time to
load to your computer. From time to time, links are broken or moved. If the links are
broken, please enter the title of the document as your search.
IL-NET. How to Free Our People: Real Life Solutions. (2003).
http://www.ilru.org/ilnet/files/manuals/Free%20Our%20People%20Manual.rtf
Medstat Group. The Homecoming Project: Wisconsin's Nursing Home
Transition Demonstration. (2002).
http://aspe.hhs.gov/daltcp/reports/WItrans.htm
(note the sections on Barriers and Next Steps)
Medstat Group. Michigan's Transitioning Persons from Nursing Homes to
Community Living Program. (2002).
http://aspe.hhs.gov/daltcp/reports/MItrans.htm
Michigan Association of Centers for Independent Living. Planning Tools for
Assisting Individuals to Transition from Nursing Homes to Community
Living. (1998-1999). (slow loading file)
http://www.copower.org/pas/nursinghometransition.php
CT Nursing Facility Transition Grant, CT Department of Social Services,
and Connecticut Associaton of Centers for Independent Living, Inc.
(CACIL). (n.d.). Transition Guide by Connecticut Association of Centers for
Independent Living. (PDF)
http://www.dss.state.ct.us/pubs/TransGuide.pdf
19
Appendices
A. Assessment Instrument
B. Home Modification Contractors
C. Moving Companies
D. Vehicle Modifications
E. Clothing, Furniture and Household Goods
F. Subsidized Housing List
G. Independent Senior Citizens Housing
20
Appendix A – Assessment Instrument
Consumer Information
Last Name ______________First Name _______________MI __
Address _______________________________________________
______________________________________________________
City ____________State _________Zip Code _____________
Social Security Number _____-____-_____
Date of Birth ____/____/____
Marital Status ____________
Family Members or Contact Persons
_______________________
Name
_______________
Relationship
___________
Phone
_______________________
Name
_______________
Relationship
___________
Phone
Finances
Income Information
Source of Income __________________
Per Month ____________ Annual _______________
Source of Income __________________
Per Month ____________ Annual _______________
Active Bank Account ________________
Currently Receiving
Medicare _____
Medicaid _____
21
Social Security Income (SSI) _____ Amount _____________________
Social Security Disability (SSD) _____ Amount _____________________
Retirement Benefits (pensions) _____ Amount _____________________
Annuity _________ Amount __________
Trust Fund ______ Amount __________
Public Assistance Amount _________ Length of Time _______________
Food Stamps Amount ________ Length of Time _______________
Any Other Source of Income ____________________________________
Outstanding Bills
Do you have any outstanding debt of any kind? _______________________
This could include but is not limited to:
Utility bills (phone, gas, electric, cable) _________________________________
Overdue rent (history of non-payment) _________________________________
Credit Card or Other Bills ___________________________________________
Employment
Currently employed? ___________________________________________
When did you last work? ____________ Type of work ________________
_____________________________________________________________
Interested in returning to work? _______Type of work ________________
____________________________________________________________
Interested in volunteer work or community service? ___________________
Type of volunteer work or community service? _______________________
_____________________________________________________________
22
Are you a veteran? _________
Have you ever been a consumer, or are you currently a consumer of:
Any vocational rehabilitation services? __________________
Any other community service agencies?
Medical Information
Primary disability _______________________________________________
_____________________________________________________________
Age at onset of disability _________
Physical disabilities (neuromuscular, orthopedic, cerebral palsy, etc.)
_____________________________________________________________
_____________________________________________________________
Cognitive disabilities (developmental disability, mental retardation, autism, etc.)
_____________________________________________________________
_____________________________________________________________
Mental/emotional disabilities (mental illness, emotional-behavioral illness, etc.)
_____________________________________________________________
_____________________________________________________________
Visual or hearing impairments _____________________________________
_____________________________________________________________
Others _______________________________________________________
_____________________________________________________________
23
Medical Information (cont’):
Are you on any medications currently? ______________________________
Are you able to self-medicate? (times, dosage)________________________
_____________________________________________________________
Do you understand and know where to seek care and treatment for the above
conditions? ___________________________________________________
Do you currently have a physician?:
In an institution or hospital ________________________________________
Community-based physician (last seen/still active) _____________________
___________________________________________________________
Independent Living Skills
Currently, do you receive assistance with any of the following?
Preparing Meals _______________________________________________
Required in the future ___________________________________________
Eating _______________________________________________________
Required in the future ___________________________________________
Bathing ______________________________________________________
Required in the future ___________________________________________
Grooming (hair, shaving, make-up) _________________________________
Required in the future ___________________________________________
Dressing (upper/lower) __________________________________________
Required in the future ___________________________________________
Toileting (bowel or bladder management) ___________________________
Required in the future ___________________________________________
Transfers _____________________________________________________
Required in the future ___________________________________________
24
Mobility (walk, wheelchair, stairs) __________________________________
Required in the future ___________________________________________
Aid Service ___________________________________________________
Required in the future ___________________________________________
Household chores (laundry, cleaning) _______________________________
Required in the future ___________________________________________
Banking (bill payment, budgeting) _________________________________
Required in the future ___________________________________________
Will you require assistance in your home? ____________________________
_____________________________________________________________
Estimated number of hours/tasks___________________________________
_____________________________________________________________
Transportation
What means of transportation do you currently use? ____________________
Do you have any type of personal transportation? ______________________
Are you able to use public transportation? ____________________________
Do you currently use, or have you ever applied for para-transit? __________
_____________________________________________________________
Do you have any friends or family who could assist you with transportation?
_____________________________________________________________
25
Appendix B – Home Modification Contractors
The following companies offer home modification contracts. They are listed without
guarantee or warranty of any kind, expressed or implied.
<List local home modification contractors and their phone numbers here>
26
Appendix C - Moving Companies
In certain situations, your Social Services Department may cover moving costs for
individuals. The following paperwork may be necessary:
 identification
 completed Landlord Form
 written verification of reason for moving
 inspection slip from the local Health Department <local phone number here>

Section Eight needs:
 the amount of rent and
 a passed inspection letter
The following local movers require two written estimates:
<List local movers and telephone numbers here>
27
Appendix D - Vehicle Modifications
The following companies offer vehicle modification contracts. They are listed without
guarantee or warranty of any kind, expressed or implied.
<List local vehicle modification companies here with their phone numbers>
28
Appendix E – Clothing, Furniture and Household Goods
The following provide free and low cost items:
(We suggest that you list all of your community’s disaster relief, pantries, soup kitchens,
used clothing outlets, church and charitable organizations. The following is a suggested
list).
Food Pantry <local numbers here>
American Red Cross <local numbers here>
Urban League <local numbers here>
Child & Family Services <local numbers here>
Concerned Ecumenical Ministry <local numbers here>
First Presbyterian Church <local numbers here>
Junior League Thrift Shop <local numbers here>
Neighborhood Service Center <local numbers here>
Salvation Army, Emergency Family Assistance (clothes and personal items) <local
numbers here>
Salvation Army (pantries) <local numbers here>
Goodwill Industries <local numbers here>
Or Call
Central Referral Services <local numbers here>
<Add more of your local agencies, churches, etc. and their phone numbers>
29
Appendix F - Subsidized Housing List
<List all subsidized housing sources here with their local telephone numbers>
30
Appendix G - Independent Senior Citizens Housing
<List your local senior services department and the local telephone number here>
<List housing units that are available to seniors>
31