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Barrier Breaker News
The quarterly newsletter of the Center for People with Disabilities.
Index to Volume 27, Number 4
- Moving Out of the Nursing Home.
- Executive Director’s Report.
- CPWD Turkey Feast.
- CPWD Takes Part in Longmont Community Affairs.
- Independent Living Program.
- Consumer Satisfaction Survey.
- Community Transition Services Program.
- Sponsor a Day at CPWD.
Moving Out of the Nursing Home
Winnie finds living on her own with her cat to be a great experience.
Part 1: Winnie Cook points out pitfalls for others
To see Winnie in her own apartment here in Boulder, Colorado you don’t wonder how she lives on her own; you wonder how she got into a nursing home in the first place.
“I went into the nursing home because of a stroke,” said Winnie. “I had to say ‘yes I would go into that place,’ because there were no other options.”
Winnie moved out of Terrace Heights Care Center this past September and into her own one-bedroom apartment. She began attending the Independent Living Program at CPWD this past July with the goal of getting out of the nursing home: she and her cat. Two months later, Winnie was in her own place.
My cat goes where he wants to go and does what he wants to,” said Winnie about her cat Tigger; “his freedom is what I like most about him.”
Although nursing homes get federal funds to provide rehabilitation for residents like Winnie, the institutions tend to focus on custodial care. The idea of rehabilitation or getting out is not even presented to some residents. Too often, the nursing home becomes the last address for residents.
“No one told me how long I would be in Terrace Heights,” said Winnie who lived in the nursing home just over one year, “no one ever talked about getting out or about rehab.”
The resident’s desires can become institutionalized and the residents may adopt the facilities decisions as their own. The day-to-day routine is reinforced by the staff, who prize compliance and praise conformity.
“They tell you that you can go when you want,” explains Winnie, “but there is always an ‘if’. If is the main word - If they say it is okay.”
A person can become lost in an institution. An individual’s desire to move back into the community can become replaced by complacency and the satisfaction with accomplishing the nursing home’s objectives. Personal ambitions are often replaced by the goals of the closely confined institutional environment.
Being a good patient becomes paramount, troublesome and difficult residents are consistently reminded that they do not control their own lives. The constant daily dominance of the institution dwarfs the personal control. An individual’s need for the institution becomes a self-fulfilling prophecy: You live in a nursing home because you need institutional care.
The fact is many nursing home residents do not need institutional care.
The Center for Medicare and Medicaid Services (CMS) found nationally that about 20% of nursing home residents "…expresses/indicates preference to return to the community." In Colorado CMS reports 3,329 responded they preferred the community; about 21% of the nursing population.
“You don’t hear about people getting out when you are in the nursing home,” said Winnie, “you never hear about that. People always talked about leaving, but they never did.”
Nursing homes are the most expensive and least desirable form of long-term care and the nursing home’s prime concern does not seem to be “the patient” but the uninterrupted flow of federal funding.
The most important tool that assisted Winnie in getting out of Terrace Heights was a US Department of Housing and Urban Development (HUD) “Project Access Housing Voucher.” The voucher, often called a Section 8 voucher, subsidizes the tenant’s rent and can be used at any apartment that will take the voucher.
The federal government, working with state and local housing providers, pays the lion’s share of the rent, while the tenant pays about one-third of their income. This arrangement not only helps to integrate our community, but it gives the tenants ownership in their housing and moves away from the “project” style housing that can become a blight.
“Affordable, accessible housing is the biggest barrier facing people with disabilities,” said David Bolin the Executive Director of CPWD, “without housing options, our community faces being placed in institutions and assisted living facilities.”
Personal attendant services and skilled nursing delivered to individual’s homes allow people with disabilities to live independently rather than being forced into expensive institutions. The focus of comprehensive custodial control in the nursing home can be replaced by consumer-directed care in the community.
For individuals moving out of a nursing home, like Winnie, personal attendant services help accomplish the activities of daily living. Rather than depending on the institution for all basic components of life, individuals manage their own care in their own home. The concept of “consumer control” returns independence to people with disabilities. Although an individual may not be able to accomplish some activity of daily living, consumer control requires people with disabilities to be in charge of these actions.
Being in charge of your life and having real responsibility is risky, but it is also rewarding.
“There is nothing to do, nothing to look forward to. Watching TV was about it,” explains Winnie about life at Terrace Heights. “Seeing the apartment made me believe, seeing it and knowing that it is yours. I love my apartment, it is a really nice place.”
by Tim Wheat
In our next issue read Part 2: Michael’s Path to Community Living.
Executive Director’s Report
David Bolin
In Home Support Services
In 2002, CPWD and the Association of Colorado Centers for Independent Living were able to pass legislation creating the In Home Support Services (IHSS) program through the Dept. of Health Care, Policy and Financing. The program should start in the next month or two and eventually CPWD will be participating in the program as a provider. We are in the process of applying and becoming certified by the state to provide the service.
IHSS is a program designed to provide greater consumer control of services than a home health agency model. Consumers can work with their IHSS agency to hire and train attendants to provide both skilled and unskilled services in their home. Attendants do not have to hold a license to provide these services and must receive some basic training from the agency. Consumers or their authorized representatives will provide the training in the home so that attendants can safely provide services for the consumer. Consumers direct their own care, schedule their attendants and with assistance from the IHSS agency manage their backup plans. Each consumer and IHSS agency must have a viable backup plan for when an attendant is unable to make the visit. Consumers are also offered the opportunity to receive one or more of the core independent living services available. These core services are: advocacy, independent living skills training, peer support and information and referral.
IHSS is a model of attendant care that allows people with disabilities to manage their care without having to handle all of the employment details that are required when using the Consumer Directed Attendant Services program. But the program allows for much more consumer direction than the standard home health agency model. As a continuum of long-term care develops in Colorado, IHSS will play a vital role in providing for more consumer direction with continued agency support as desired by the consumer.
CPWD Turkey Feast – A Real Community Experience
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Omni Financial bought the food, staff cooked it, volunteers served it, and everyone sat down with consumers and their families to enjoy a great traditional meal. Nearly one hundred people sat elbow to elbow here at the center, and more that a dozen “carry-out” meals went to consumers who couldn’t attend. |
“It gets better every year,” I heard a consumer in the serving line say. This year, we were sure of success from the start. With a generous donation from Omni Financial, we were able to plan our menu and buy the food in time to do our best cooking. Thank you Omni! |
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We want to extend a special thank you to the three Omni volunteers who were on their feet from 11:00 a.m. until the last dish was washed. Sarah Bolin, Jason Stanley, and Tye Todd tackled their chores with grace and enthusiasm, setting the tone for everyone to have a good time. |
CPWD Takes Part in Longmont Community Affairs
By Diane Groff
St. Vrain Community Council
This monthly group of area non-profits meets to discuss pertinent issues and network with each other. October's topic was Addressing the Needs of the Latino Community. In November, Paul Tiger presented "Internet Etiquette.” December's meeting is scheduled for helping with the annual Holiday Basket Program at the Fairgrounds. We will have vouchers for those families who did not get registered and wish to show up for post distribution on that day.
Longmont Housing Opportunities Task Group
This monthly group of area non-profits, community members, City of Longmont Staff, and communities of faith members meets to address the issue of homelessness and affordable housing in the Longmont area. We have adopted the Housing First model as the method to develop resources to meet this need.
This year’s Point in Time Homeless Survey will take place on January 24,25,and 27, 2005. The new survey forms will be available in early January and we will hold a training. CPWD will be addressing the issue of nursing home residents who are considered homeless by Housing and Urban Development (HUD) guidelines.
Criminal Justice System and People with Disabilities
This monthly meeting is composed of community members, non-profit representatives, City of Longmont staff, and guest presenters. We have been meeting monthly to discuss areas of need in the Criminal Justice System and how these areas affect people with disabilities. We have been looking at successful models in the state on community response to some of these issues. This group is a sub committee of the Transitions Team, (Boulder and St. Vrain School Districts) and will meet on Dec. 14th to compile the accomplishments we have had for 2004, and our goals for 2005. January 18th, 2005 we will have a guest presenter from Weld County talking about their successful model for law enforcement when dealing with people who have developmental disabilities.
Independent Living Program
By Andrea Cohen
There is a lot of movement expected in the ILP in the next few weeks. A new consumer has entered the program and is expected to be in his own apartment soon. Two more consumers have transitioned from the Arapahoe apartments into public housing. Boulder Housing Partners will work their maintenance magic, and hopefully have the vacant units available for occupancy around Christmas. Two consumers are interested in these apartments (one male and one female), and we anticipate that they would enter the program just after the New Year. This is a very exciting time for the ILP, and we look forward to a year of many positive changes and new beginnings!
Consumer Survey
In October, CPWD mailed over 1,000 Consumer Satisfaction Surveys to active consumers. We asked participants to check all of the basic service categories that applied. As expected, the highest incidence of service was housing. This was followed by information. There were no surprises in most categories, although we would like to see a higher incidence of consumers setting independent living goals.
Most of the responses included comments, and many included suggestions for new programs and services. Although all suggestions will be taken into consideration, CPWD does not have any direct funds to offer. We can assist our consumers in locating other agencies to help with a financial crisis that affects the ability to live independently, but it is unlikely that we will pursue financial assistance funding.
Many people requested services that we already provide. Our staff hopes to do a better job in the future of informing consumers of the wide range of services and programs they may access. Our new CPWD brochure describes most of the services we offer, and it is available in the office or mailed by request. Our website,
www.cpwd-ilc.org is also a good source of current information.
Community Transition Services Program
As an outgrowth of the Nursing Facility Transition Grant, CPWD and the ACCIL were able to pass legislation in the spring of 2004 to institutionalize the transition program from nursing facilities. This legislation provides for qualified agencies to provide transition services from nursing facilities back into the community. The program provides for services including funding for rental deposits, start up furniture and household items and other necessities of transitioning from a nursing facility, as well as, funding to pay the provider for their transition services. This legislation made community transition a part of the Elder, Blind, Disabled Waiver program under Medicaid.
Currently, the state is waiting for approval of the amendment to the waiver prior to implementing the program. Once the amendment is approved by CMS, the state will start accepting applications to become a provider of the service. CPWD will apply to be a provider in this program and has continued transitioning people out of nursing facilities.
If you know someone interested in transitioning from a nursing facility, please contact Andrea
Cohen, Tim Wheat or Cheryl Hodgson at the center.
Sponsor a Day at CPWD
$100
Dedicate your day to a friend or advertise your business
Call Judy for Details
(303) 442-8662, ext. 106
Board of Directors
Dr. William Saker, Ruth Arnold, Neil Lubar, Kenda Vaughan, William Callahan.
Management Team
David Bolin, Executive Director; Robert Trujillo,
Deputy Director; Pam Brunsell, Home Health Director.
Return to the Index.
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