Comments for Uniform Assessment Tool Organization Name: Access Living Organization Address: 115 W. Chicago Ave. Chicago, IL 60654 Organizational Representative: Tom Wilson Contact information for the organization representative: Phone (312) 640-2125 e-mail [email protected] Response to RFI Questions Introduction Access Living is the Center for Independent Living for Metropolitan Chicago. We provide programs and services for people with disabilities that empower them to remain living in the community rather than in institutional settings. Since 1997, Access Living has performed assessments using the Determination of Need (DON) instrument to determine appropriate services for people moving out of nursing homes and into the community. We have moved more than 400 people out of nursing homes over the past 15 years. In addition, Access Living has been a moving force in advocating for consumer directed home and community services. Our Personal Assistant Services program has trained thousands of home care workers and has helped thousands of consumers to find home care workers. Access Living acknowledges that the RFI is targeted to entities that have developed a uniform evaluation instrument or have technical skill beyond our own with respect to developing and replacing the current DON. Nevertheless, Access Living has unique expertise in empowering consumers to live independently, and this expertise is equally important in meeting the needs of both consumers and those who will administer the new system. Many in the disability community are fearful that the adoption of this new uniform evaluation instrument can and even will be used as a subterfuge to change eligibility standards that make it more difficult to obtain home and community services or to receive adequate hours of services. We hope our concerns are unfounded, and we believe the development of a new tool could, with appropriate consumer and stakeholder involvement, present an opportunity to improve the system. 1. Access Living believes that any selected vendor must be familiar with available current tools, such as the Minnesota Long Term Care Consultation Services Assessment Form or the Comprehensive Automated Resource Evaluation (CARE) used in Washington state and modeled on the Oregon ACCESS tool. Access Living believes that the tool adopted must have no institutional bias and must respect a consumer’s Olmstead rights as it assesses physical, mental and cognitive abilities and links people to community services when the community is the most integrated setting appropriate to the individual’s needs. We believe that the tool adopted should mirror the values included in Federal Nursing Home Reform Act but apply those values to community settings as well. Emphasis on quality of life as well as quality of care New expectations that residents(consumers) abilities will be maintained The requirement of a resident (consumer) assessment process that would lead to an individualized plan of care Access Living believes that the state and the selected vendor must create a stakeholder process that includes consumers and users of the system to assure that the system will meet consumer and assessor needs. Stakeholders and end users should be involved in testing the system. Consumers should be active participants in the planning, implementation, and oversight of the assessment adoption process. Access Living would like to be part of this process, and our consumers are likely to want to participate. Access Living believes that agencies transitioning consumers from institutional settings to community settings need to be trained in use of the assessment tool to make sure the transition process is streamlined and the counselor who knows the consumer best is involved in the assessment. Appendix Currently, the siloing of services has made finding current Illinois examples of good entry level screenings difficult, especially for persons with multiple disabilities that cross the silo divisions. The assessments used to move people out of nursing homes are an example of multiple evaluation steps that have included nurse reviews and lengthy risk assessments. Even in these situations, there continues to be too much emphasis on either physical health or mental health but not enough integration of those two areas and not enough consumer input into the levels of risk with which they are comfortable. We want to ensure that the assessment instrument embodies the ADA and Olmstead requirements for services. CMS points out that "under the law [ADA], MLTSS must be delivered in the most integrated fashion, in the most integrated setting, and in a way that offers the greatest opportunities for active community and workforce participation." Such a setting "enables individuals with disabilities to interact with non-disabled persons to the fullest extent possible." CMS writes that "States are encouraged to include in their benefit packages supports to enable workforce participation such as personal assistance services, supported employment and peer support services, as appropriate and desired by the participant." In addition, the assessment instrument must incorporate standards of cultural competence, assuring that the assessment employs the consumer’s own language and cultural customs. Access Living supports the adoption of a Universal Assessment Tool for Illinois if it is used correctly to create more consistent access to high quality home and community services. We support the State’s application for the Balancing Incentive Program (BIP) funding as another tool that can be used to expand home and community services. Illinois needs to create a Long Term Services and Supports (LTSS) system that allows people with disabilities to fully integrate into society. This integration means providing services that allow people to be active in all aspects of life in and outside their home and around the community. Integration includes being able to work, volunteer, worship, socialize, pursue personal interests and participate in civic activities. An expansion of home and community based services to more people should not be a reason to cut service levels for people who are successfully functioning in the current state LTSS systems. The implementation of uniform assessments must not work to the detriment of the consumer directed approaches that are working well for many people. Financial qualifications need to be flexible to address the needs of people who are working or potentially could be working and whose employment may disqualify them from traditional Medicaid but who would be unable to earn enough to cover home service costs and retain enough income to cover a reasonable standard of living. Assessments need to be timely, as well as complete, accurate, and fair. We have witnessed a long history of unnecessary institutionalization, after discharge from hospitals, medical facilities, and failure of previous supports, resulting from nursing homes’ capability of doing quick (if often inaccurate) assessments and admissions while such assessment capability is lacking for the purpose of obtaining home and community services. There have been excessive waiting periods for assessment with the Division of Rehabilitation Home Services Program and waiting lists for community services in the Division of Developmental Disabilities. It is important that there be a conduit for immediate services if that need is determined by the new uniform assessment tool. Access Living believes that it is important that people with disabilities and their advocates be involved in the development and testing of the uniform assessment tool. This is especially true of people who use home and community services in their daily life and have the greatest amount of experience in knowing what they need to live independently. The process needs transparency and opportunities for feedback at various steps in the development of a uniform assessment tool and in determining the processes involved to qualify and to receive services. Access Living has identified a problem in the past that needs to be addressed by the uniform assessment tool. Seniors face premature institutionalization given the lack of sufficient community services at even modest levels of impairment, and this shortfall in services increases as their functional needs increase. Consumer control is a value that Independent Living Centers prize. It may mean somewhat different things across disability types, but is a vital goal for all people with disabilities. Access Living’s experience has led us to support strongly the right of consumers to hire, fire, and manage their services as the optimal model of LTSS. That aspect of consumer control provides for flexibility, personal security, respect and self-esteem, validation of personal preference, and high quality and cost-effective services. Any assessment tool should elicit and recognize consumer goals, including the level of independence sought by the consumer. Comments from additional Access Living staff Access Living held a meeting at which staff members with experience in performing assessments provided the following observations. The current mini mental used in the Home Services Program assessment gives the consumer potential points on the DON but has no functional link to the service plan. Cognitive assessment questions play very little role in the assessment or types of services delivered by DORS. Under the current DON assessment, the consumer gets no points on the DON if an impairment is not physical. We know that many people have multiple disabling conditions that cross the lines of current service delivery. Some responses should trigger a deeper probe of the area being assessed. Such triggers can also have the beneficial effect of preventing overly long and exhausting assessments by allowing inapplicable questions to be skipped. The new assessment tool needs to ensure that the State meets the maintenance of effort requirement with existing consumers. We do not want to see this tool used as a mechanism to make it harder to get home and community services. Medical questions pertaining to a type of disability have been discouraged in the past. Our support for an assessment strongly rooted in functional abilities is firm, but we do not oppose additional medical information being used. We want a tool that is objective and improves inter-rater reliability. This would require the building in of deeper probes. Our experience is that some clients do not volunteer information, are too proud to admit functional limitations, are not always aware of whether they can or cannot perform a given task, or fear divulging information that they think might prevent them from moving into the community. Asking the right follow-up questions often elicits information that would be missed by the basic assessment questions. Assessments done in institutions often lack the environmental component that can make a big difference in a person’s needs. In the case of a transition from an institution to the community, a reassessment should be done after the person has moved to detect environmental factors. For example: Is the laundry in the person’s unit in the same building, or is it necessary to go some distance? Mental health issues should be explored more deeply if there are possible indicators of mental health needs, substance abuse, or other behavioral issues. Some of Access Living’s staff had some knowledge of the Minnesota Long Term Care Consultation Services Assessment Form and felt that, while any assessment needed to comport with Illinois realities, it was not necessary to reinvent the wheel and that we should look at states with functioning standardized assessments. Access Living staff felt strongly that the assessment should encourage participant self-determination and provide opportunities for self-direction of services.
Posted on: Wed, 10 Jul 2013 15:04:10 +0000
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