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In collaboration with the State of Colorado’s Department of Health Care Policy and Financing (HCPF), the
Center for People With Disabilities (CPWD) and the 9 other centers for independent living in the state implemented a grant from the Centers for Medicare and Medicaid Services (CMS) in April 2001. The grant was completed as of August 30, 2004 with 130 people transitioning from Colorado nursing facilities. The NFT Project team is comprised of at least one staff member from each of the ten independent living centers across the state of Colorado. The Independent Living Centers assigned staff to go out into their local communities and work with individuals who had been identified as wishing to transition out of skilled nursing facilities back into their communities. They also provided information about the right to live in the community to as many nursing facility residents as possible. Much of the information in this handbook was based on the experiences of the NFT Project team. The members of this team included: Jane Schiele (NFT Statewide Coordinator), Kristie Braaten (HCPF Grant Coordinator), Julie Aird, Amy Allred, Bill Bass, Brent Belisle, Marjorie Bosworth, Cindi Brennan, Jennifer Cantrell, Alison Dawson, Cheryl Hodgson, Mary Moore, LaTonya Reeves, Jennifer Schmanski, Jona Wigington Jimmy Williams, Larry Williams and Patricia Ziegler. This handbook is designed to help other advocates or agencies to inform many more individuals about their right to live in the community, and to assist those who desire a transition back to their community.
Jane Schiele
NFT Statewide Coordinator
Center for People With Disabilities
EDITOR'S NOTE: The print version of this
Handbook includes and appendix that is not included here. For the
print version of the Handbook Contact: Colorado Department of Health Care Policy and Financing - 1570 Grant Street Denver, Colorado 80203-1818
Phone: (800) 221-3943.
Nursing Home Transition Project Handbook
Index
Introduction:
The Voice of Choice
“Today I woke up about 8:30 and decided to have real eggs for breakfast. Afterwards, I fed my cat and decided to take the bus downtown to meet up with a group of friends at our favorite coffee shop. Nine years ago, the things I did this morning would have only been a dream. You see, I was in a nursing home for 7 years. It all started when I had a stroke and ended up in a hospital. I was discharged from the hospital and sent to a nursing home for rehabilitation.
The rehabilitation was over in ten months, but I continued to live in the nursing home. I told the staff that I wanted to move out, but they never offered the assistance I needed in order to leave. I was on Social Security Disability and only earned $602 a month - certainly not enough to make it on my own. I really thought I was there to die.
Even though I’m only 37, so many of the friends I made in the nursing home had passed away. Finally, one day my roommate was talking to this woman about moving out. I told her I was interested in leaving too. She gave me her card and told me to give her a call. I did, and after a lot of work – here I am today – alive and thriving in my own home.”
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Chapter 1:
Preparing Yourself
Why
transition?
There is an institutional bias in our country. Once Medicaid funds began flowing into nursing facilities in the 1960s, an assumption was made that congregate care was the cheapest and most efficient form of long-term care. Doctors, discharge nurses, and families believed that nursing homes were a good choice for people with disabilities. As the industry grew so did the proportion of Medicaid funding. Soon, there were few Medicaid funded options for home and community based services.
Growing alongside the nursing home industry was the disability rights movement. As people with disabilities became empowered, earned the right to an equal education, and fought for equality in employment, public transportation, and physical access, the desire to live and work in the community became key. The 1990 Americans with Disabilities Act (ADA) legislatively supported that desire.
Transition is about offering a choice that was essentially unavailable for nearly 30 years. The choice of people with disabilities to live and work in the community and be in control of their own lives. As a navigator of transition, you are bringing this choice to people and assisting in the process that moves them from custodial care to independent living.
You may notice that this handbook is written from an independent living perspective. The independent living philosophy proposes that the only real expert on a person’s disability is the person who has the disability. Outsiders will look at the usual aspects of diagnosis or disease. The person with the disability looks at function, ability, and personal goals. Disability is a part of life. A person with a disability has the right to be in control of his or her own life. If that control means asserting the right to live in the community, that is what the independent living philosophy supports, and hopefully what the transition navigator will facilitate. Choice does not guarantee a positive result, but allowing an individual to choose, and then to succeed or fail by good or bad decisions, is true equality and real independent living.
Direct information from the resident is your best resource. If the resident’s information is contrary to all other accounts, investigate, and trust your instincts.
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Why is there
resistance?
Many people believe that the nursing home is the right place for that person to live. They may feel that living in the community is unsafe. They may fear the consequences of failure. The concern of the transition navigator should be the resident’s opinion. What does he or she want for their life?
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What gives me
the right to offer that choice?
The Colorado Nursing Facilities Transition Project was a pilot program for the implementation of
Olmstead.
In 1999, The U.S. Supreme Court made a landmark ruling known as the Olmstead Decision. In
Olmstead v. L.C., the Supreme Court upheld the right, as it appears in the ADA, of an individual with a disability to live in “the most integrated setting.” According to the Supreme Court in the
Olmstead Decision, the unnecessary segregation of the individuals with disabilities in institutions may constitute discrimination based on disability. The court ruled that the Americans with Disabilities Act might require states to provide community-based services rather than institutional placements for individuals with disabilities. Under the court’s decision, states are required to provide community based services for persons with disabilities.
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How do I get
in the door?
Keeping in mind the Olmstead Decision, it is up to the transition navigators to build a bridge between themselves and the nursing facilities. One way to do this is to write the nursing facility a letter, letting them know who you are and your intentions of assisting individuals to transition out of the nursing facility and back into the community. Other methods include phoning for an appointment with the facility administration or staff, visiting the facility, or writing an article for the local newspaper introducing your agency.
Relationship building between transition navigators and nursing facility staff is imperative for referrals from the facility. Remember, there may be numerous residents who want to transition into the community, but do not know they have the choice. If you can’t get in the door, you can’t let them know.
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How do I identify residents
who want to transition?
Many residents of nursing facilities have forgotten or have never known that they have the right to live in the community. Others have become so disempowered by institutional living that they may not believe themselves capable of living independently. Every decision has been made for the resident: what time they will wake up, what food they will eat and when and how often they can take a shower. Your job as a transition navigator is to help the resident make an assessment of their needs, abilities, and choices. As will be discussed later, it is important to continue to advocate and assess at each step as the process of transitioning out of a nursing facility unfolds.
If you have a good rapport with the nursing facility staff, it is likely that they will direct you to potential transition candidates. Once informed of your service, the residents themselves may contact you for information. Through promoting your program with advertising or word-of-mouth, friends and families of people with disabilities in institutions will approach you.
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Will there
be any
roadblocks?
Just by virtue of being in an institution, there will be assumptions that the person belongs there and needs to stay there. Fear is always a factor. The reality is that a person who has lived in an institution can come to depend or may appear to depend on the personnel of the facility. However, this behavior has likely been learned by living in an institutional setting, and has no relationship to the resident’s actual abilities. Watch the shock on a resident’s face when he is asked to participate in some of the work necessary for the transition. The assumption of helplessness has been made by many people, yet when the resident takes on the responsibility, the assumption is broken and the resident becomes empowered.
Family members may also try to stand in the way. For some, there is a fear that if their relative fails, they will have to take on more responsibility and, perhaps, expense. Others may truly believe that 24-hour care is necessary for their relative’s safety. Some family members may feel the need to defend their choice of putting the person in the nursing home. Regardless of who raises objections, it is ultimately the decision of the nursing home resident.
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Doesn’t
the staff
know best?
Before ever meeting a resident you may receive a great deal of information about him or her. Many times the information you may receive from the staff is not accurate or based on the wishes of the individual, but perhaps, for example, on a family member who is concerned about the responsibilities that may come with their relative moving back into the community. It is even possible that a personality conflict between the resident and staff has influenced the written case notes.
Other staff may need to defend their belief that the work they have been doing is of value and is the right choice for the resident. There are many reasons that those tangential to the resident may want to maintain the status quo. Therefore it is imperative to go directly to the resident and discuss what he thinks about transitioning back into the community.
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Chapter 2 –
Preparing the Resident
Where does the
transition begin?
Transition begins when a face-to-face conversation with the resident in the nursing home reveals his or her desire to move back into the community. Listen to his thoughts about living in the community. Speak to him in person about what potential changes he wants to see in his future. He may have grown accustomed to having his day-to day decisions made for him. Let him know that by the act of showing up to meet with him that you see his dreams and desires as meaningful.
Use your face-to-face meeting to determine the resident’s level of interest in transitioning. Be sure to express that transitioning is a highly involved process and that his complete investment in the process is of vital importance. Listen and be respectful, but be firm about the realities of transition.
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How do I
build a rapport
with the resident?
The best way to get to know someone is simple. Put down the paperwork, sit down and talk with him or her. This could happen at your first meeting, but more likely will come a little later. Listen. Ask about her life. Who are you today? What did you do prior to living in the nursing facility? What are your dreams for the future? The resident is often the last person to be asked her thoughts. She should be the first.
It is through casual conversation that a transition navigator often finds out a great deal about the resident’s life experiences. Being open and attentive to hearing about her life experiences models the respect you have for her as an individual. She will know that you have respect for the choices she has made in the past, and will make in the future. Align with the resident as an advocate.
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How much control
should I take?
It is important for the resident to feel in control of the transition. You will, of course, play a major role, but as a navigator, not a pilot. From the beginning of the process, it is important to establish each person’s role. Letting the resident know how important his role is in the transition leads to the empowerment he will need in order to reclaim his life. It is your role as transition navigator to explain the process. It is the resident’s role to take action. Decide who will do what. Often a verbal contract or a written letter of understanding is helpful for avoiding surprises down the road.
Some transition navigators prefer to let roles be defined naturally as the transition progresses. Either way is fine. The important thing is to establish the kind of rapport with the resident that makes this decision an obvious one.
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How long will
the transition take?
Many factors determine how long it will take – availability of housing, need for attendant services, or even the resident’s motivation. An average transition into the community can take from six weeks to as long as a year. Be upfront about estimated time for a transition. It is better to over estimate the length of time it will take. Many times the residents are so ready to be living in the community that they want to skip crucial steps. Others may feel overwhelmed with anxiety, excitement or anticipation when they see the possibility of a transition back into the community, then learn how long it may take. Reassure the resident that that the two of you are working as a team with additional support from the SEP case manager and nursing facility social worker. It may be helpful to divide the components of the transition into small groups of short-term goals. As tempting as it may be to take shortcuts, the chances of success are greater if all the pieces are in place before leaving the nursing facility.
Be realistic about all aspects of the transition. One of the most common mistakes is making promises that you cannot keep. Let the individual know, for example, that it may be several months before he or she is living in the community. To build confidence, do promise something that you know will actually happen. You can promise to be on time for the next meeting, and perhaps bring something that will help move the transition forward.
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How do I know
the resident is
serious about
transition?
Your assessment skills are used throughout the entire process. You are continually assessing the resident’s investment, strengths, weaknesses, abilities and motivation. Doing this gives you the information you need to determine the pace of the transition, and to help the resident do some proactive problem solving. It is always better to confront potential difficulties that could lead to failure in the community. Keep in mind that not everybody is a good candidate to transition back into the community.
“I transitioned somebody whose disability impacted his judgment and interfered with living independently. After a year in the community, he admitted that he wasn’t ready and he preferred the structure of a nursing facility. He could walk out of his room and receive the assistance and community he needed.” - Transition Navigator
Remember to use your assessment skills and intuition through out the entire process.
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What are some things
I should know about upfront?
Release of Information - In order to get going on a transition you must have Release of Information forms signed by the resident. There are numerous individuals involved in the resident’s life and their information and level of involvement can often be of importance. However, you must get the individual’s permission to speak with them first.
Consumer Directed Model – Step out of the box. Get to know the person. The individual has been labeled so often because of the disability. This is a great opportunity to see beyond the disability and work with the person. Labels don’t always describe what’s inside. On the contrary, the medical model will describe the individual in medical terminology or as a diagnosis instead of a human being.
Drugs and Alcohol - Just as you would build rapport with other people, you need to build enough rapport with the individual to find out if there are issues around drugs or alcohol. If the use of either is current, finding out this information will allow you to direct them to resources such as various 12 step meetings that convene in his or her community, a mental health center that works specifically with individuals with addictions or a drug or alcohol rehabilitation center. Perhaps treatment can be started in the community before leaving the nursing facility. Be respectful in discussing addictions and how they can influence transition. However, it is important for the resident to understand his accountability as a member of the community. Failing to address an addiction does not preclude a transition from happening, but it may affect the long-term outcome.
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Chapter 3 –
The Nuts and Bolts
of Transition
How do I know when to begin?
If you have met with a resident who has expressed a desire to transition to the community, you have already begun. The “getting to know you” conversations will give the resident time to carefully consider his or her decision. It will give the transition navigator insights about the resident’s commitment to the process and about how long the transition might take. Get as much information as possible in your initial conversations, and address issues as they arise. There is no magical moment when it is time to address issues. Each resident is different and each will have different concerns.
Out of respect for the resident, keep meetings as private as possible. The nursing facility cafeteria, conference room or a lounge might be the best you can do inside the nursing facility. Try to avoid meeting in the resident’s room unless he or she makes that choice and there are no roommates present. Remember, the information you are asking for is private. Put yourself in the resident’s shoes. How would you feel if somebody came into your bedroom, while you were in bed just wearing your pajamas and discussed very intimate details about your life? A person contemplating a life altering change deserves your respect.
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How do I get
organized?
Think about the last time you changed jobs or moved your household. There were so many tasks, large and small, that you probably thought you would never get it all done. It is likely that you were in charge of your own life at the time, and still the change was difficult. Keep in mind that the person you are working with has not been in charge of his life for a while. He will need a lot of guidance, and you will need a lot of patience.
The information you require and the tasks that must be competed will necessitate working together closely and staying organized. The checklist in the appendix can be useful. In addition, you may want to help the resident create a system for keeping her personal documentation in order. These documents are essential for accessing the resources that will be needed for community living: housing, benefits, home health services, transportation, and others. A binder, a storage box, or accordion files are all good organizing tools.
The resident, with your help if necessary, should gather these documents:
- Photo Identification
- Social Security card
- Current Bank Statement (From nursing facility or bank outside of institution.)
- Birth Certificate
- Social Security award letter (amount of benefit)
- List of Assets
- Letter from doctor with explanation of how long individual will be unable to work.
- Cost of Medications that are not paid for under insurance
- Cost of child care
- Outside medical costs with receipts.
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What are the
major components
of transition?
All of the following items must be considered for a successful transition. As you work with these, be sensitive to the resident’s fears, insecurities, and doubts. You may discover information that will make the transition more difficult than expected. If the resident is truly invested in the process, these challenges can be met.
This list is in the order that has worked well for other transition navigators. However, every situation is different, and you may vary the order in which you get things done.
Personal History
Finding out about a resident’s personal history is important when considering community integration. Talk to the individual and respectfully ask, over time, about life before the nursing facility. Some of the issues to cover are mental health history, alcohol or drug use, medical history, level of care needed after leaving the nursing facility and criminal history.
It is important to find out about medical and psychological issues early in the transition process. If you know that there is a history of mental health issues, you can address that and encourage an individual to get support in community such as therapy through the mental health center. If a transition is made without this knowledge, it is easy to attribute negative behaviors to a lack of cooperation or character rather than helping the person look for the right kind of mental health supports.
Medical Files
A resident’s medical file can hold a great amount of information. For example, there may be a phone message from a doctor, friend or advocate whom you did not know about. That person might have important information regarding the resident. Issues of which you were unaware or perhaps the resident has not been forthcoming about, such as mental health or other medical diagnosis might be discussed in the file. Be sure to obtain a release of information from the consumer prior to requesting to view this file. HIPAA regulations require expressed permission to view a consumer’s medical file.
Background Checks
If applying for a Section 8 housing voucher or public housing, it is helpful to know a person’s criminal history from the start. Though each housing authority has different rules, the Department of Housing and Urban Development (HUD) may deny a person’s housing application if they have three or more misdemeanors or one felony in the last 3 years. It is important to know the severity of the offenses upfront so there are no surprises. It may be possible to advocate for acquiring a voucher despite the criminal record.
Financial Benefits
Often the resident will not have any idea what kind of benefits they receive. They know that they receive $50 per month allowance, nothing more. Without money, the individual will not be able to pay rent. In order to find out the exact amount of benefits, talk to the bookkeeper or the social worker at the nursing facility. A Single Entry Point case manager, Independent Living Center’s benefits specialist and/or your local workforce center’s benefits specialist could help. Or, along with the resident, phone the toll-free Social Security number. All of these individuals may have the paperwork needed to determine the resident’s actual income. If he or she needs to apply for Social Security benefits start the process with the resident. Contact your local Social Security office to receive all of the necessary initial paperwork.
Transportation
Does the resident know how to ride the city bus? Does he or she need paratransit? If so, is the phone number available to contact them? Some local public transportation companies offer travel training for people with disabilities. Practice transportation before the individual leaves the nursing facility. Ask the resident to meet you at appointments. Have him set up his own transportation with your assistance, if necessary. Understanding how to get where you need to go is a key learning experience for successful community integration.
Housing
Find out what the resident’s housing situation was before entering the nursing facility. Did she have a place to live? Was she using a Section 8 housing voucher? Does she now need accessible housing? Does she own a home?
The sooner you submit housing paperwork the better. Even though there may be a multi-year wait before a voucher becomes available, it is important to get on the list. Another option for subsidized housing is to apply for the housing authority’s public housing and each project based Section 8 apartment complex in your area. Through your advocacy efforts you may be able to obtain a voucher, or another subsidized housing opportunity may become available much sooner than expected. Other potential options are returning to one’s own home, homeless housing programs, shared housing or using whatever resources the resident has available.
Make sure the resident is involved in the process of finding the residence where he or she will live. Listen to his hopes for the kind of home he wants and the kind of neighborhood he wants to live in. The process of selecting a residence and procedures such as signing a lease or other agreements is great practice for reintegration into the community.
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The Single Entry Point and Home Health Care
When you know for certain that you are going to be transitioning someone out of a nursing facility, ask the nursing facility discharge planner or social worker to contact the Single Entry Point (SEP), if you are not already in contact with a SEP case manager. Most communities use an SEP agency to coordinate Medicaid services received in the community. The SEP needs to meet the consumer and do a functional assessment (In Colorado the ULTC 100.2) to determine if the individual will be eligible to receive Home and Community Based Elderly, Blind and Disabled Waiver Services (HCBS-EBD). HCBS-EBD may provide supports for most activities of daily living that cannot be performed by the individual. These can range from assisting with toileting to housekeeping.
The SEP will need to complete the functional assessment with input from you, the nursing facility resident and other people who have significant information regarding the resident’s functional ability. The sooner the assessment is done, the sooner the move can actually be made. Coordination with the SEP case manager is essential to the long-term success of a transition. You and the SEP case manager can determine the appropriate time to meet with the resident; in some cases, the SEP case manager will meet with the resident sooner than in other cases. It depends on the transition plan. It is up to the SEP to contact a home health agency and establish other Medicaid long-term care services. However, it can be helpful to contact some resources in anticipation of the transition.
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Moving Day!
Refer to the checklist in the appendix to double-check that all services are in place, and everything that needs to be purchased ahead of time has been purchased. Remember, this is a big change for the resident and some chaos can be expected. A period of adjustment is inevitable for everyone who is involved in this transition. It takes time to realize that living in one’s own home is much different than nursing home life.
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Chapter 4 –
Pulling It All Together
Is there a
support system
in place?
Nothing influences a resident’s chances of a successful transition into the community more than his or her support system. It is hard for any person, with or without a disability, to maintain a satisfying life in the community without the support of friends, family, church or other community connections. This is especially true when an individual is coming from an institutional setting where everything was provided, including a ready-made community.
From the beginning of the transition process it is essential to find out about the resident’s support system. Find out what community supports were used before coming to the facility. From whom does the resident expect to get support during the move? The resident should take part in reestablishing connections or making new ones. The transition navigator can help by assisting with making these contacts. Finding out who the person is connected to will give you good insight into what life was like before entering the nursing facility, and what it has become since. Who has disappeared? What affect has that had? How does the resident want to rebuild a life in the community?
Reestablishing external supports is empowering for the person in transition. Having control over what her supports will be, once she reintegrates into the community, is a good first step to taking charge of her life. She may choose family, friends, a therapist, an advocate, support groups or an independent living center as her support system. In Colorado, several individuals who transitioned out of nursing facilities ended up living in the same apartment complex and formed their own support
group.
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How do I address fear?
What are the fears that this person is experiencing? It takes a great deal of courage for an individual to decide to make the move out of the nursing facility. Knowing a resident’s fears is important in this process. What may appear to be resistance to the transition process, could be fear. Keep in mind how you have felt and acted during major transitions in your life. Imagine those feelings and actions ten fold for the person who is moving out of an institution. The resident may never have dreamed that he or she would be making decisions again.
A typical fear is loneliness. The reality of losing the familiar community of the nursing facility and finding a new one out in the world can be overwhelming. It takes great will to transition out of the nursing facility; it takes even greater will to reach out during the loneliest times. Discuss being proactive. Look for natural supports. Help create new supports based on the kind of community life the resident wants.
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What kind of life
does this person want?
One way to assist an individual in gaining the strength to live in the community is to start picturing themselves out in the community. Here are some ideas: Ask the resident to write a list of everything she uses in a day. When an individual puts together the components that make up their day they are able to get a more complete idea of the details that make up his or her daily life. A resident might also write a paragraph about her expectations of a typical day in her residence. Does she plan to work or volunteer? Does she need assistance with budgeting? How often does she expect to see her attendant and what tasks will the attendant complete? You will soon discover whether the resident’s picture of the future is a realistic one.
Who does the resident imagine to be part of the new community? Who does he expect to interact with? Who does he want to interact with? How much time will he spend alone? Spend with others? Your questions will help the resident work through his or her vision of the future, and possibly deflect many potential disappointments.
Also, find out about the resident’s passion? Does she love painting, playing the guitar or political activism? Would she like to start pursuing these areas while still in the nursing facility? Could this lead to new relationships in the community? Helping connect a person to activities in the community can lead to long-lasting supports.
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How do I
build
confidence?
A major component of the transition process is assigning tasks. Some transition navigators start assigning tasks even before a face-to-face meeting. For example, a transition navigator may request before or at her first meeting with the resident, that he contacts the housing authority and get a pre-application for the Section 8 waiting list. Assigning tasks is a way to empower the resident and also give the transition navigator a feel for how invested the resident is in his transition. The more personally invested and motivated the resident is in transition process, the better chance he will have of succeeding. Whether or not someone follows through with a task can be indicative of his investment in the process, his fears of moving into the community or cognitive level of functioning.
One way to assist an individual in getting out into the community is to start doing something on his own and individuating from the nursing facility. Find out if the Independent Living Center in your area provides classes or support groups. This is also a good time to observe where the individual is as far as socialization, independent living skills, and follow through. It is also a way to assess cognitive strengths and weaknesses.
Talk about getting a job or volunteering. The resident may have the assumption that having a disability means not being able to work. Rebuild confidence. Perhaps the resident can volunteer at the local independent living center or school. Most importantly, find out what the person can do and what the person wants to do.
Remember: This is about independent living. If the transition navigator does everything for the resident in the moving process, he might get out on his own, only to realize he does not have the confidence and strength to live independently. His fear of living on his own may be so great that the full integration takes much longer than expected or might never happen.
Much too often a resident will move out into the community and not have any idea what resources are available in the area they are moving to and how to access those resources. Before moving the resident should have a chance to see where the closest bus stop to their home, the closest grocery store or how to get to their doctor’s office from their home. If at all possible, practice these trips with the resident before they move out into the community. You can also pair the resident up with a peer who has transitioned from the nursing facility and back into the community. Watching a peer who has made this transition can be very powerful for the transition. If the resident needs new photo identification, take the bus with them to get their identification. Or if the independent center’s peer support group is having a party, invite this resident.
Here are some ideas to help welcome the person back into the community:
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Bring her a bag full of flowers to brighten up her apartment or a transportation package with the bus schedule phone numbers of a cab company and the rates of cabs.
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Invite her to a community advocacy meeting. You can get a gift certificate donated to your agency from a local restaurant, botanical gardens or museum. Use a local resource guide such as the one provided in the appendix.
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When is my job over?
In Colorado’s Community Transition Services program, the navigator’s job is done when the move occurs. Colorado allows an additional 7 days to ensure that items essential for a successful transition are in place. After that, the individual should begin to make use of her newly established community and long-term supports.
If you are working with grant funds, your role as transition navigator will be dictated by the last scheduled follow-up contact. Depending on the type of rapport you have established with the resident, he or she may consider you their “point” person and contact you from time to time. If the two of you have worked together to establish a good community support network, the calls will diminish over time.
Jane Schiele
NFT Statewide Coordinator
Center for People With Disabilities
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