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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
B. Plan Development and Implementation Process
C. Assessments on Behalf of Potentially Eligible Populations
D. Availability of Community-Integrated Services
E. Informed Choice
F. Implications for State and Community Infrastructure

 

And be sure to document everything!

 


A. Comprehensive, Effectively Working Plans

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 . . . "

  1. What programs already exist in your state that can "serve as a framework?" The state needs to specifically name those programs, in writing, and explain why they're appropriate to "serve as a framework" for serving people in "integrated settings."
  2. Are there any programs already in place around the state that can get people into the community? Name them, where they are, what they do, and how they could be used to get folks out of institutions. Be specific.
  3. Can they serve people all over the state?
  4. Where are the gaps in these programs? The planning group should define where the gaps are, what is needed to fill in the gaps, specifically, and set a timeline and budget for filling in the gaps.

"Considers the level of awareness and agreement among stakeholders and decision-makers . . . "

  1. Who ARE the "stakeholders" in your state? The Decision-makers? The Plan needs to list them by name, by group.
  2. Who's missing? Does this list include people with disabilities, or groups who really do speak for them?
  3. Are there people on the list who oppose freedom? Be sure you have some say in who's on this list.
  4. Do the "stakeholders and decision makers" understand the issues? Do they support freedom? (Send them to Freedom Clearinghouse!) Make sure the list of "stakeholders and decision-makers" includes those who understand the issues.
  5. Do the "stakeholders and decisionmakers" agree on the issues? If not, learn how to negotiate effectively with them.

"And how this foundation can be strengthened . . . "

  1. Make sure the State Plan spells out, clearly, how the state plans to train people in the issues involving freedom.
  2. Offer to provide training, using Freedom Clearinghouse materials. Call on Freedom Clearinghouse Advocates in other states for help.
  3. Find out what successful advocates are doing -- maybe they can help by training you, your group and others involved in developing your State's Plan.

 

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 . . . "

  1. What is going to be written into the plan to ensure, or guarantee, that the state will be moving people out of institutions? Make sure the State Plan spells out the "pace" it will set, with timelines and target dates.
  2. How many people will be moved out of institutions in 6 months? In one year?
  3. How many years till it be before everyone is transitioned out?
  4. Make sure all this is spelled out in the Plan.

"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.

  1. Does the state maintain a waiting list?
  2. How many people are on it? This should be explained in The Plan.
  3. How did they get on it? This should be explained in The Plan. Just getting onto a waiting list is impossible in many states. States should be required by advocates to explain their procedures.
  4. What do advocates consider a "reasonable pace?" Spell it out, in writing, in the Plan.

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.

  1. Does the state need to appropriate more money for
    • attendant services?
    • community support services?
  2. Identify specifically what's needed.
  3. Explain why it's not available now. Describe the steps to take to get there.
  4. Include deadlines.

 

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. . .

  1. The state plan must spell out who's going to do the 'assessments." They should be done by independent living advocates rather than bureaucrats or discharge planners. Make sure this is spelled out in the Plan.
  2. . . . And who's going to be "assessed." Make sure your state provides a list, a census, of all the state institutions, nursing homes and other facilities.
  3. Make sure the Plan has deadlines for the assessments.

 

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 . . . "

  1. What is the state going to do to "evaluate the adequacy?"
  2. Who is going to do the evaluating?
  3. What benchmarks is it going to use?
  4. Has it spelled this out in writing in the State Plan?

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:

  1. Who's going to conduct the "reviews"? Make sure advocates have a say in this. In Kansas, the state contracts with independent living centers to do this.
  2. How "objective is the group that will conduct the reviews?"
  3. What criteria is the state using? Is that spelled out in the Plan?
  4. What constitutes "thorough?"
  5. "What is "periodic"?
    • How often will these reviews take place? At a minimum, reviews should occur once a year.
    • Where, and
    • when?

"In institutional settings . . . "

The letter from HCFA names these specific kinds of institutions:

  • state institutions
  • ICF/MR facilities
  • nursing facilities (i.e. "nursing homes"),
  • psychiatric hospitals,
  • residential service facilities for children
  1. Does your state Plan identify these facilities, by name and location?
  2. Does it list the number of actual people -- not "beds" -- in each?
  3. The Census should be done annually; this should be spelled out in the State Plan.

 

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.

  1. Who puts people into nursing homes and institutions?
    • Discharge planners at hospitals send a large number of people to nursing homes.
    • Who else makes "recommendations" and referrals?
  2. Make a list of the ways in which people are sent into institutions.
    • Examine the list: What needs to change in each instance?
    • Discharge planners and others must be told by the State Medicaid office not to refer people to nursing homes, for example.
  3. What things like this must state officials do to change the "culture" of institutionalization? Make a list.
  4. Make sure the State Plan specifically addresses "changing the culture" of referring people automatically to institutions.
  5. Make sure the State Plan describes in detail what steps officials will take to make sure discharge planners and others tell "patients" they can choose to get services in their homes. In Kansas, each waiver that provides home and community services has a single "take-charge" entry point.
  6. States should tell people of options other than institutions, and give them a real choice to use these options


B. Plan Development and Implementation Process

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.

  1. Is everybody who ought to be involved in this state plan coming to these meetings?
  2. Make a list of those groups and individuals who should be involved.
  3. Are they being invited to meetings?
  4. How can you be sure they are involved?

 


C. Assessments on Behalf of Potentially Eligible Populations

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."

  1. If your State Plan does not state that everyone is eligible, it must spell out the circumstances that make someone ineligible for services in the community.
  2. You and other advocates have a right to challenge what the state proposes.

 

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"

  1. How is the state going to identify people in institutions?
  2. Is its plan sufficiently comprehensive? How can you ensure the state will have a reliable census?
  3. In some states, advocates are carrying out this work of finding out the names of people in institutions. Will you and other advocates in your state do this?
  4. Is your role written into the state plan, with
    • deadlines and
    • funding?

 

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.

  1. How will the State Plan propose to do this?
  2. How will your state ensure that this will happen?
  3. What is its deadline?

A procedure must be written into the State Plan.

  1. Who will contact individuals "at risk of institutionalization?"
    • Your group?
    • Local independent living centers?
    • Other organizations?
  2. Make sure your state plan is specific and provides adequate funding for this.

 

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

  • county social service workers,
  • state agencies,
  • family services,
  • hospital discharge planners.

 

  1. The State Plan must spell out, in detail, how it intends to make sure people are not automatically referred into institutions.
  2. It must set deadlines for getting its new procedures implemented.
  3. It must develop procedures so that "business as usual" won't go on, and people getting out of hospitals, for example, won't automatically be put into nursing homes.

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.

 


D. Availability of Community-Integrated Services

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"

  1. What programs already exist in your state that offer community- based services?
    • Independent living centers?
    • Home health agencies?
    • Other programs (like the Community Options program in Madison, WI)?
  2. The state needs to specifically list those programs, in writing.
  3. If programs don't exist, the state, or advocacy groups, may need to create them. How will this happen? The State Plan must spell out the particulars, including funding.

"assesses the extent to which these programs are able to serve people in the most integrated setting appropriate (as described in the ADA) . . ."

  1. Are there any programs already in place around the state that can get people into the community? Name them, where they are, what they do, and how they could be used to get folks out of institutions. Be specific.
  2. Can they serve people all over the state?
  3. Where are the gaps in these programs? The planning group should define where the gaps are, what is needed to fill in the gaps, specifically, and set a timeline and budget for filling in the gaps.

"identifies what improvements could be accomplished . . . "

The State Plan should list

  • specific improvements needed,
  • measures and
  • deadlines.

". . . 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:

  • Advocates can carry information into institutions.
  • There should be news stories about this in local media.
  • States should provide information about an individual's right to get services in the community whenever the state tells someone about their benefits.

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?

  1. What are these supports?
    • Attendant services?
    • "Chore" services?
    • Help with managing money?
  2. Your state plan should list the supports and services people need.

    The term "services and supports," as defined in the Medicaid Community Attendant Services and Supports Act, means:

    (i) tasks necessary to assist an individual in accomplishing activities of daily living, instrumental activities of daily living, and health-related functions;

    (ii) acquisition, maintenance, and enhancement of skills necessary for the individual to accomplish activities of daily living, instrumental activities of daily living, and health-related functions;

    (iii) backup systems or mechanisms (such as the use of beepers) to ensure continuity of services and supports; and

    (iv) voluntary training on how to select, manage, and dismiss attendants.

     

    'Activities of daily living' include eating, toileting, grooming, dressing, bathing, and transferring.

    'Instrumental activities of daily living' include meal planning and preparation, managing finances, shopping for food, clothing and other essential items; performing essential household chores, communicating by phone and other media, and getting around and participating in the community.

    .

. . . 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 . . .

  • availability
  • quality
  • adequacy

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

  • assistance services,
  • chore services and
  • other supports (see the list above from MiCassa).

"Whether its plan is adequate to address the needs of those without family..."

  1. The State Plan must spell out what services can be offered in terms of
    • back-up attendant services,
    • emergency services and other supports.
  2. Are there specific programs or groups that offer back-up on on-call services?
    • Are these programs statewide?
    • Do they have enough staff?
  3. How can the programs be beefed up to really meet the need? This should be spelled out in the State Plan.

 

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"

  1. What, exactly, happens when a person receives services in the community?
    • Can the person get out of the house?
    • Get a job?
    • Go shoping?
    • Get out and get around?
    • Participate in neighborhood affairs?
  2. The State Plan must spell out how, specifically, the services help the individual, and must specifically point out that the services are to be provided in the community, not in an institution.

 

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.

  1. The Plan should list funding sources by name. In many cases, funding now going to nursing homes could be used to fund community-based services, like attendant pay. But states will have to make a hard political choice to fight nursing home operators who want the money -- and who will sue to get it!
  2. The State Plan should spell out, in clear terms, the savings that will result when money is removed from institutions and put into community-based supports.

" Planners assess the extent to which these funding sources can be organized into a coherent system . . "

The State Plan must:

  1. spell out details of the current system of funding, and
  2. note where that system needs changing.

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 . . . "

  1. What groups receive services in institutions currently? HCFA's guidelines list
    • Elderly people with disabilities
    • non-elderly people with physical disabilities,
    • people with developmental disabilities
    • people with mental illness,
    • people with HIV-AIDS
  2. Are there other groups in your state? Add them to the list. A good way to begin is to check the Medicaid waivers in place in your state. What groups are they for?
  3. For each of these groups, the State Plan must spell out the specific changes needed in order to provide services in the community rather than an institution. Which changes are related only to one group? Which changes relate to more than one group -- or all groups.
  4. Traditionally, programs have separated people along "diagnostic" labels. Your state's plan should focus on a person's function, not diagnostic label. MiCassa, for example, describes all services and supports as being either " hands-on assistance, supervision, or cueing."

 

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.

  1. The State Plan must spell out
    • a specific pace at which people will move off the waiting list, and
    • that must be at a "reasonable" pace -- that is, quickly. Don't settle for less. Even murderers can't be held unless they're charged, but, as ADAPT says, people with disabilities are jailed in institutions for the "crime" of having a disability"!
  2. Advocates must pressure the state to drop waiting lists. Individuals who need services should get them in the community, and not be required to wait for them.
  3. The State Plan must spell out how it intends to abolish its waiting lists.

 


E. Informed Choice

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."

  1. What information do people need to make informed choices? They need to know:
    • what their options are
    • what's available
    • how will they get it
    • what will it be like
  2. Most important, people need to know
    • they have a right to get services while remaining in their communities,
    • they don't have to live with their families in order to get services -- unless they WANT to . . .
    • they don't have to go into a nursing home to get help bathing, or dressing, or cooking, or going to the bathroom. . .
  3. They should be told the names of programs that provide attendants, and
  4. They should be told how the services work.
  5. What will social workers and discharge planners tell people?

All this must be spelled out in the State Plan.

 


F. Implications for State and Community Infrastructure

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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