©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.
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
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.
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.
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.
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.
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?
· 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.
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 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 long-term 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.