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Our Blueprint for developing an effective State Plan to implement Olmstead On January 14, 2000 The Health Care Financing Administration sent a letter to all Governors and State Medicaid Directors telling them they were responsible for implementing the Olmstead decision, which called for states to provide its services in the "most integrated setting" appropriate. The letter instructed states to develop a State Plan for this, and provided guidelines. Watch as Texas advocates develop their State Plan Freedom Clearinghouse has used HCFA's Guidelines to develop a Blueprint for advocates to use as they meet with other "stakeholders" to develop the State Plan.
A.
Comprehensive, Effectively Working Plans
And be sure to document everything!
HCFA GUIDELINES: Principle: Develop and implement a comprehensive, effectively working plan (or plans) for providing services to eligible individuals with disabilities in more integrated, community-based settings. When effectively carrying out this principle: 1. -- The State develops a plan or plans to ensure that people with disabilities are served in the most integrated setting appropriate. It considers the extent to which there are programs that can serve as a framework for the development of an effectively working plan. It also considers the level of awareness and agreement among stakeholders and decision-makers regarding the elements needed to create an effective system, and how this foundation can be strengthened.
Freedom Clearinghouse Blueprint: "Considers the extent to which there are programs that can serve as a framework . . . "
"Considers the level of awareness and agreement among stakeholders and decision-makers . . . "
"And how this foundation can be strengthened . . . "
HCFA GUIDELINES: 2. -- The plan ensures the transition of qualified individuals into community-based settings at a reasonable pace. The State identifies improvements that could be made.
Freedom Clearinghouse Blueprint: "Ensures the transition . . . "
"At a reasonable pace . . . " This has to do with waiting lists. Everyone must be allowed to choose community services (see D5 , below), and waiting lists should be abolished.
Note that the HCFA letter says specifically that this "reasonable pace" can't be "controlled by the State's endeavors to keep its institutions fully populated." "Identifies improvements that could be made . . . " Make sure the state plan spells out specifically what needs to be done to make the waiting list move more quickly.
HCFA GUIDELINES: 3. -- The plan ensures that individuals with disabilities benefit from assessments to determine how community living might be possible (without limiting consideration to what is currently available in the community). In this process, individuals are provided the opportunity for informed choice.
Freedom Clearinghouse Blueprint: "Benefit from assessments to determine how community living might be possible. . .
HCFA GUIDELINES: 4. -- The plan evaluates the adequacy with which the State is conducting thorough, objective and periodic reviews of all individuals with disabilities in institutional settings (such as State institutions, ICFs/MR, nursing facilities, psychiatric hospitals, and residential service facilities for children) to determine the extent to which they can and should receive services in a more integrated setting.
Freedom Clearinghouse Blueprint: "Evaluates the adequacy . . . "
Only people with disabilities who are living in the community can truly evaluate the adequacy with which the state is conducting reviews. Make SURE advocates' role in this is spelled out clearly in the State Plan. "Conducting thorough, objective and periodic reviews . . . " Each of the following should be spelled out in the State Plan:
"In institutional settings . . . " The letter from HCFA names these specific kinds of institutions:
HCFA GUIDELINES: 5. -- The plan establishes similar procedures to avoid unjustifiable institutionalization in the first place.
Freedom Clearinghouse Blueprint: What specific things can your state do to make sure people are not put into institutions? These must be listed in the State Plan.
HCFA GUIDELINES: Principle: Provide an opportunity for interested persons, including individuals with disabilities and their representatives, to be integral participants in plan development and follow-up. When effectively carrying out this principle: 1. -- The State involves people with disabilities (and their representatives, where appropriate) in the plan development and implementation process. It considers what methods could be employed to ensure constructive, on-going involvement and dialogue.
Freedom Clearinghouse Blueprint: "involve people with disabilities (and their representatives, where appropriate) . . . " The fact that the "and their representatives, where appropriate" part is in parentheses signals to us that HCFA doesn't intend for these "representatives" to be the key people. The key people are the people with disabilities themselves. So watch it when the major people at the meeting are not people with disabilities speaking for their own interests but "parent groups" or provider and helper groups.
HCFA GUIDELINES: 2. -- The State assesses what partnerships are needed to ensure that any plan is comprehensive and works effectively.
HCFA GUIDELINES: Principle: Take steps to prevent or correct current and future unjustified institutionalization of individuals with disabilities. When effectively carrying out this principle: 1. -- The State has a reliable sense of how many individuals with disabilities are currently institutionalized and are eligible for services in community-based settings. The plan considers what information and data collection systems exist to enable the State to make this determination. Where appropriate, the State considers improvements to data collection systems to enable it to plan adequately to meet needs.
Freedom Clearinghouse Blueprint: ". . . has a reliable sense of how many individuals with disabilities are currently institutionalized . . . " Does the state have an up-to-date and reliable census of how many "beds" it is paying for with state money? The State Plan must set a deadline by which it will have a complete Census of its institutions. " and are eligible for services in community-based settings" Everyone who is eligible for state services should be allowed to receive services in the "Most integrated setting."
HCFA GUIDELINES: 2. -- The State evaluates whether existing assessment procedures are adequate to identify institutionalized individuals with disabilities who could benefit from services in a more integrated setting.
Freedom Clearinghouse Blueprint: "whether existing assessment procedures are adequate to identify institutionalized individuals"
HCFA GUIDELINES: 3. -- The State also evaluates whether existing assessment procedures are adequate to identify individuals in the community who are at risk of placement in an unnecessarily restrictive setting.
Freedom Clearinghouse Blueprint: " . . whether existing assessment procedures are adequate to identify individuals in the community who are at risk . . . " No individual should be put into a nursing home or other institution at any time now without being given clear options for getting services in the community.
A procedure must be written into the State Plan.
HCFA GUIDELINES: 4. -- The plan ensures that the State can act in a timely and effective manner in response to the findings of any assessment process.
Freedom Clearinghouse Blueprint: "ensures that the State can act in a timely and effective manner in response to the findings . . . " What will the state do when someone needs services? Will it put them into a nursing home or other institution? Changing the current practices to put people into institutions will take real effort and change at the level of
This requires a great change in the culture of long-term care. Your State Plan must spell out the methods the state will use to change this culture.
HCFA GUIDELINES: Principle: Ensure the Availability of Community-Integrated Services. When effectively carrying out this principle: 1. -- The plan identifies what community-based services are available in the State. It assesses the extent to which these programs are able to serve people in the most integrated setting appropriate (as described in the ADA). The State identifies what improvements could be accomplished, including in information systems, to make this an even better system, and how the system might be made comprehensive.
Freedom Clearinghouse Blueprint: "identifies what community-based services are available in the State"
"assesses the extent to which these programs are able to serve people in the most integrated setting appropriate (as described in the ADA) . . ."
"identifies what improvements could be accomplished . . . " The State Plan should list
". . . including in information systems, to make this an even better system,. . " People in institutions and at risk of being institutionalized must be told about their right to live in freedom. How will the state get the word to them? This must be spelled out in detail in the State Plan:
The State Plan should set a deadline for getting information to people. "and how the system might be made comprehensive." If there is a program available in your state's largest city, how can other programs like it be offered in other cities and in rural areas? The State Plan must ensure comprehensiveness. Timelines should be developed in the State Plan to show how the system will reach all residents, and serve all "populations."
HCFA GUIDELINES: 2. -- The plan evaluates whether the identified supports and services meet the needs of persons who are likely to require assistance in order to live in community. It identifies what changes could be made to improve the availability, quality and adequacy of the supports.
Freedom Clearinghouse Blueprint: "Whether identified supports and services meet the needs..." There are many programs already -- but can they help get people out of institutions and offer them the in-home supports they need?
. . . of persons who are likely to require assistance in order to live in community. This refers to the state legislature's annual budget forecast of how much money will be needed. It's crucial that state budgets include adequate amounts for home and community-based services. "Identify what changes could be made to improve the . . .
of these services. Make sure each of these items is covered, in detail, in the State Plan.
HCFA GUIDELINES: 3. -- The State evaluates whether its system adequately plans for making supports and services available to assist individuals who reside in their own homes with the presence of other family members. It also considers whether its plan is adequate to address the needs of those without family members or other informal care givers.
Freedom Clearinghouse Blueprint: "Evaluates whether its system adequately plans for making supports and services available to assist people in their own homes" This part of the State Plan must specifically address the needs of people who now live with their families, but who need personal assistance services. The State Plan must spell out how it will offer services to families to provide
"Whether its plan is adequate to address the needs of those without family..."
HCFA GUIDELINES: 4. -- The State examines how the identified supports and services integrate the individual into the community.
Freedom Clearinghouse Blueprint: "examines how the . . . services integrate the individual"
HCFA GUIDELINES: 5. -- The State reviews what funding sources are available (both Medicaid and other funding sources) to increase the availability of community-based services. It also considers what efforts are under way to coordinate access to these services. Planners assess the extent to which these funding sources can be organized into a coherent system of long term care which affords people with reasonable, timely access to community-based services.
Freedom Clearinghouse Blueprint: "reviews what funding sources are available . . . to increase availability of community-based services. . . " The issue of funding is the political "hot potato" of freedom. State bureaucrats, and state legislators, are extremely reluctant to take money from nursing home operators to fund in-home services. The money should "follow the person": If an individual's Medicaid benefit is used to pay for a $90 a day "bed" in a nursing home, that $90 should be taken from the nursing home and put into community services for that individual. Doing this, however, will take willpower on the part of state bureaucrats and legislators. Advocates can help by pressing hard for this re-direction of funds.
" Planners assess the extent to which these funding sources can be organized into a coherent system . . " The State Plan must:
Make sure that the State Plan spells out that money is available from existing institutional funding.
HCFA GUIDELINES: 6. -- Planners also assess how well the current service system works for different groups (e.g. elderly people with disabilities, people with physical disabilities, developmental disabilities, mental illness, HIV-AIDS, etc.). The assessment includes a review of changes that might be desirable to make services a reality in the most integrated setting appropriate for all populations.
Freedom Clearinghouse Blueprint: "Planners . . . assess how well the current service system works for different groups . . . "
HCFA GUIDELINES: 7. -- The plan examines the operation of waiting lists, if any. It examines what might be done to ensure that people are able to come off waiting lists and receive needed community services at a reasonable pace.
Freedom Clearinghouse Blueprint: People have remained on waiting lists for years.
HCFA GUIDELINES: Principle: Afford individuals with disabilities and their families the opportunity to make informed choices regarding how their needs can best be met in community or institutional settings. When effectively carrying out this principle: 1. -- The plan ensures that individuals who may be eligible to receive services in more integrated community-based settings (and their representatives, where appropriate) are given the opportunity to make informed choices regarding whether -and how- their needs can best be met. -- Planners address what information, education, and referral systems would be useful to ensure that people with disabilities receive the information necessary to make informed choices.
Freedom Clearinghouse Blueprint: "are given the opportunitity to make informed choices regarding whether -- and how -- their needs can best be met."
All this must be spelled out in the State Plan.
HCFA GUIDELINES: Principle: Take steps to ensure that quality assurance, quality improvement and sound management support implementation of the plan. When effectively carrying out this principle: 1. -- Planners evaluate how quality assurance and quality improvement can be conducted effectively as more people with disabilities live in community settings.
Freedom Clearinghouse Blueprint: "Quality of care" has been used to keep people in nursing homes, where they will be "safe" and get "professional care." We all know how well that has worked! The state plan must spell out how to ensure that people can be in control of their own services, in their own homes, and be assured of "quality." Advocates must work to make sure that Nurse Practice Acts are changed to ensure that we have control over our own services.
HCFA GUIDELINES: 2. -- The State also examines how it can best manage the overall system of health and long term care so that placement in the most integrated setting appropriate becomes the norm. It considers what planning, contracting and management infrastructure might be necessary to achieve this result at the State and the community level.
Freedom Clearinghouse Blueprint: " . . . so that placement in the most integrated setting appropriate becomes the norm . . " The Olmstead Decision, and the Americans with Disabilities Act, calls for no less than a complete change in the system of how services are delivered. In the State Plan's overview and throughout its pages, it must reflect the commitment to changing the entire system of long-term services in the state from one of nursing homes and other institutions to a service grid of community supports and services. To do this will require a commitment to resist pressure from nursing home operators and other interests who want to keep money flowing to the current institutions. This will require a political commitment from elected officials. Advocates' hardest -- and most important -- job is to make sure that political will exists at the state level to implement the Olmstead decision.
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