Missouri's Olmstead Implementation

Activity No. 5: Examine whether existing programs and services provide individuals with disabilities who may be eligible for community-based treatment with information regarding this option.

Informed Consent
Summary of Practices Related to Informed Choice by Agency
Department of Elementary and Secondary Education, Division of Vocational Rehabilitation
Department of Mental Health, Division of Alcohol and Drug Abuse
Department of Mental Health, Division of Comprehensive Psychiatric Services
Department of Mental Health, Division of Mental Retardation/Developmental
Department of Health, Bureau of Special Health Care Needs, Adult Head Injury Program
Department of Social Services, Division of Aging
Department of Social Services, Rehabilitation Services for the Blind (RSB)
Barriers and Recommendations
Activities
Budget Action, Federal Action, and Statute Changes

Informed Consent

Discussion:  

Background Information:  The Olmstead decision is based on the premise that informed choices are required to allow the consumer with a disability to determine for themselves if they wish to live in an institutional setting or in the community.

General Public Comments:  Participants at the Public Hearings and Commission meetings commented on issues related to informed consent including who should conduct the informed consent, the need for an ombudsman and the professionals' opinion.

I've been disabled since June, so I don't know any of this.  So I need to be informed.  How can I be informed?  I need to be told everything.  I don't know all the technicalities.  I don't know all the ways and means.  I don't know anything about anything.  This is going to have to be explained to me completely.  How?... If you don't know what choice you have, you have no choice. (Springfield)

One of the main principles in the Olmstead decision was that there should be informed choice.  If a professional believes that a person should remain in the community and the person wants to remain in the community, reasonable accommodations should be made to make this possible.  The same ruling applies to individuals who currently reside in institutions.   In the Cape Girardeau public hearing, this issue was raised. And then - then another issue is what we kind of wondered about is if the nursing homes and that are really giving our consumers the informed choice.    Continuing, this speaker felt that sometimes physicians also did not know about this choice and recommended nursing homes too quickly.  So these consumers kind of afraid because they put so much power in this doctor that, you know, they think that they're not capable when they are to live on their own so it may be a matter of educating physicians and so forth.  Another speaker in Cape Girardeau stressed that placement should be the family's decision along with the appropriate professionals to ensure that. 

Informed choices may require access to legal rights.  One speaker in Springfield noted that They need attorneys that will stand behind them and say no, no, no you must not do that.  You are violating this person's civil rights.  She has a right.  Another presenter also noted the need to have informed choice about the community services that are available. If your parent is looking at going into an institution, they need to be informed that if they could benefit from having maybe Meals on Wheels, someone to come in and help them shop or bathe, these services could be provided in an effective manner in their homes, that that is their choice.  This is all about choice. (Springfield).  One problem can be the timing of any decision to institutionalize.  That's the problem.  People have to make the choice so fast and usually they are so scared and the family is wanting to just get it over with and it's done very quickly (Springfield).

In Springfield, how to provide informed choices was posed as a challenge.  One speaker said that the stakeholders group has really wrestled with this since February when they had their very first meeting.  One of the decisions they thought they really could benefit from in the long run as well as the short run would be if they could train everybody who are the direct service people who see the individuals with disabilities and we're not just talking about in nursing homes, but those who might be in danger of going into the nursing home. ...If they knew what's available across-the-board depending on what your disability was and what your age was, and if they could present that information so they could present informed choices so they would know what they could pick from, then they would be in a better position to say what they want to do and know that if you choose the nursing home how, you could choose to get out of it later.

Another speaker noted that there was a need for some ombudsman, someone who is trained, all trained the same is going to go in and we're going to know that everyone in that place had informed choice.  .. There needs to be some sort of accountability for professionals like myself who are working in rehab units to make sure that we're doing an informed choice, that we're all along our programs are built around choice and that choice is being honored  (Springfield).

One further issue brought up about informed consent was the opinion of the treating professional and the consumer's right to disagree with their decision.  We don't want to forget if your treating professional doesn't think that's the appropriate setting you have a right to change treating professionals.  If you have your own guardianship and the doctor says no, I want you to stay in that nursing home, maybe this is the nursing home's doctor... so if you can find a different doctor, you have a right to a different doctor (Springfield).

Training of staff on how to assure consumers have informed choices is important.  We were to review the agency training for frontline staff in the area of informed choices to assure consumers are aware of their option to live in the most integrated setting appropriate to their needs.  For that particular section it was not addressed by the agency.  (Commission Hearing)

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Summary of Practices Related to Informed Choice by Agency

The following summary reflects the comments of the Division of Comprehensive Psychiatric Services, Rehabilitation Services for the Blind, Department of Health, Division of Aging, Division of Alcohol and Drug Abuse, Division of Vocational Rehabilitation, and Division of Mental Retardation and Developmental Disabilities on the issue of informed consent.  There is significant variance across the agencies surveyed about the following questions from the Agency Survey.  Three questions were asked:

What information does each person who comes into your program receive about this (Olmstead) option? How is this told to the person and/or guardian?

What information do you give to people who are currently institutionalized about the Olmstead option?  How is this told to the person and/or guardian?

Does your agency provide training to those who offer consumer choices of residential settings?

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Department of Elementary and Secondary Education, Division of Vocational Rehabilitation

Information each person entering program receives about Olmstead

The Division of Vocational Rehabilitation operates a consumer-directed program through the 21 Centers for Independent Living (CILs).  Each center is responsible for developing and providing information in alternative formats as necessary.  Each center  has its own brochure and is responsible for the manner in which other needed information is conveyed.

Information given to people who are currently institutionalized

The Division of Vocational Rehabilitation cannot provide Personal Care Assistant (PCA) services to clients in an institutional setting.  However, CILs have information readily available for institutionalized individuals who desire information regarding transitioning to the community.

Current training

Each of the 21 individual centers is responsible for training consumers on how to supervise and train their personal attendants.  The Plan of Care developed by the Assessment Team includes a training plan based on each consumer's needs.  Each consumer can choose his own attendant as long as it is not a spouse. The consumer is then responsible for training that attendant.  Based on informed choice, CILs provide and coordinate additional training for consumers and their attendants.

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Department of Mental Health, Division of Alcohol and Drug Abuse

Information each person entering program receives about Olmstead

Since the Division of Alcohol and Drug Abuse's treatment services are provided in a community-based setting and in the least restrictive environment possible, the Olmstead decision is not referred to by name.  All treatment providers are required to have policies and procedures that enhance and protect the human, civil, constitutional, and statutory rights of each client.  A notice of clients rights, opinions, recommendations, and grievances is posted prominently in all certified treatment agencies. (Refer to The Certification Standards for Alcohol and Drug Abuse Programs for detailed information pertaining to client rights.)

Current training

The Division of Alcohol and Drug Abuse conducts two annual training events for administrative and direct care staff which cover a variety of topics including information about state and federal guidelines, which impact the operation of treatment programs.  Ongoing training needs are assessed and specialized training events are held as needed.  In addition, ongoing training is provided at locations throughout the state by the Mid-America Addiction Technology Transfer Center, Kansas City, Missouri.  The Addictions Technology Transfer Center consults with Division and provider staff to ensure that the training/education needs are met.

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Department of Mental Health, Division of Comprehensive Psychiatric Services

Information each person entering program receives about Olmstead

The Division of Comprehensive Psychiatric Services promotes informed consumer choice, and has been actively developing community-based services and supports, although Olmstead Decision is not referred to by name.  The treatment planning process is the time when options are discussed with both the individual in treatment and the guardian.  The individual and the guardian both sign the treatment plan.  The goals of the treatment plan are individualized according to individual needs.  When an individual is referred for Supported Community Living, the staff member assigned to that referral works with the treatment team and the individual referred to explore community options consistent with the individual's needs.  The individual selects the program they want from among those options.

Information given to people who are currently institutionalized

The treatment planning process is the time when options are discussed with both the individual in treatment and the guardian.  The individual and the guardian both sign the treatment plan.  The goals of the treatment plan are individualized according to individual needs.

Current training

The Division of Comprehensive Psychiatric Service provides training to inpatient staff who offer choices to consumers and is in the process of developing training for staff of contract providers who offer options.  That training does not currently contain information specific to the Olmstead Decision.

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Department of Mental Health, Division of Mental Retardation/Developmental Disabilities

Information each person entering program receives about Olmstead

When a person applies for services at the Division of Mental Retardation and Developmental Disabilities (MRDD), they are given a packet of information that includes a Waiver Fact Sheet.  This one-page (front & back) sheet describes home and community based services and includes information on eligibility and rights to due process.  A memo was sent to Regional Centers on August 19, 1999, that instructed staff to begin using the Waiver Fact Sheet to inform consumers and families of community based services.  As needed, staff was asked to translate or further explain the information to individuals and or guardians.

Information given to people who are currently institutionalized

At the Division of MRDD Habilitation Centers, staff has been asked to inform each resident and guardian/family about the option of services in the community.  As part of the process, they have been instructed to give the individual a copy of the Waiver Fact Sheet.  A memo was sent to Habilitation Centers on February 9, 2000.  Center staff was instructed to ensure that all residents and/or their guardians are given information and have an opportunity to make an informed choice.  To avoid confusing or alarming people, staff have been instructed to present the information in the manner that would make it most clear to each individual.  Staff was discouraged from simply mailing the information. 

The Division of MRDD has a brochure, "Individual Rights of Persons Receiving Services from the Division of Mental Retardation and Developmental Disabilities."  A request has been made that this brochure be revised under Section 1. (dot point #6) to say, "To receive services and supports in the most integrated setting that appropriately meets the person's need as determined by the person's support team.  The team may include, but not be limited to, the person, parents, guardian or authorized representative."  A Fact Sheet, Assuring Access to Community Living for the Disabled, was made available to field staff in August.  The Fact Sheet was intended to summarize the Olmstead Decision for staff who must explain the decision to consumers and families.  Copies of the document could also be given to consumers, families, or guardians.

Current training

Waiver training is provided to new staff by Regional Centers and Habilitation Centers.  Since implementing the first Home and Community-Based Waiver (HCBW) in 1989, the Division's service system and philosophy has focused on community-based services and services in the most integrated setting.  In January 2000, a revised waiver manual was distributed to all Regional Center service coordinators.  The manual is also on the Internet, http://www.medicaid.state.mo.us/ and will soon be on the Division's Intranet.  Training is provided from time to time to service coordinators by central office staff to update service coordinators on Medicaid programs or changes to the HCBW. Most recently, the central office arranged a videoconference to improve staff knowledge of state plan personal care services and waiver services authorized by Divisions of Aging, Vocational Rehabilitation, and Bureau of Special Health Care Needs.  The training included staff from the Division of Medical Services and the Division of Aging.  Working to coordinate services with other agencies was stressed.  These services are often used in conjunction with the MRDD waiver services and are critical to supporting people in the community.  The videoconference was conducted on October 4.  Other state plan services often needed by persons in the Division of MRDD service system were also discussed.  The session was videotaped and notes and follow-up information was posted on the DMH Intranet for staff.

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Department of Health, Bureau of Special Health Care Needs, Adult Head Injury Program

Information each person entering program receives about Olmstead

The Department of Health, Adult Head Injury Program Service Coordinator covers general information about Olmstead Act at the initial service coordination meeting, since the goal of the program is to assist individuals in their effort to live independently.

Information given to people who are currently institutionalized

The Department of Health does not provide direct institutional care.  Since there is no institutional care, there is no specific information given.

Current training

General information is given by Service Coordinators to people who are currently institutionalized about the Olmstead option.

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Department of Social Services, Division of Aging

Information each person entering program receives about Olmstead

Since 1992, the Division of Aging (DA) has utilized the Missouri Care Options (MCO) program to screen individuals who are considering nursing facility placement and assess their ability to remain in the community with services.  Upon initial request or referral for services from Division of Aging, all potential options are explained to an individual and/or their representative.  This includes both services available within the community as well as those offered through institutional care.  Protective services are available for persons at risk of abuse, neglect, or exploitation.

Information given to people who are currently institutionalized

The same information is provided to institutionalized persons upon request.  DA tracks individuals who enter a nursing facility for short-term stays in order to assist with transition back to the community, whenever possible.

Current training

 DA has partnered with hospitals, clinics and other community sites to base field staff in settings that are easily accessible for seniors and persons with disabilities aged 18-59.  The Community Outreach Initiative also provides DA with the ability to arrange necessary services in a more timely manner.  The Division prints and distributes several brochures which explain programs and services available.  In addition, DA publishes the Missouri Guide for Seniors annually as a comprehensive directory of the many programs, resources, and services available to seniors and persons with disabilities.  Selected materials are also being translated into Spanish and Russian languages to provide written information to non-English speaking populations. 

DA also operates a statewide, toll free number for information and Referral (I & R).  This number is publicized through a variety of means and is a strategic part of our method of dissemination of program and resource information.  DA also partners with the ten Area Agencies on Aging (AAAs) to provide information and referral activities within each of their regions.  In addition, DA has partnered with the University of Missouri-Columbia (UMC) to utilize the Community Connection database for the Shared Care program.  Shared Care is a system by which caregivers may access information about programs and services to assist them in caring for a loved one.  Community Connection is a comprehensive, web-based directory of providers, resources, social service agencies, and others who provide assistance to caregivers.  Ongoing training is provided to DA staff regarding case management activities, including agency policies in relation to the Olmstead Decision. 

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Department of Social Services, Rehabilitation Services for the Blind (RSB)

Information each person entering program receives about Olmstead

Rehabilitation Services for the Blind staff inform consumers who are blind or who have visual impairment about other appropriate resources for independent living.  Consumers served by RSB are typically living in their homes.  Staff do not have decision-making authority over or funding for institutional placements.

Identification of Barriers and Recommendations from the Olmstead Committees:

Following are barriers and related recommendations from the Olmstead Committees related to informed consent.

Barriers:  There are many people in institutions who qualify for and could use the existing home and community-based options, but they are not informed of those options.

Recommendations: 

1.  State agencies should improve the assessment and screening process done before a person enters an institution and periodically thereafter. Add informed choice components to assure the individual knows all of the options and rights.

2.  Staff must review all applications for nursing home admission or institutional placement.  Additional screening and training to staff to screen for disability and refer persons to DA, CILs, CMHCs, Regional Centers, or at least provide them information upfront about service options that might be available before the person is admitted to the nursing home or other segregated settings should be developed.

Barrier:  Most individuals are not informed about the services available in community or institutional settings.

Recommendation:

The commission should designate a lead agency or entity that would be responsible for arranging for a single source document that outlines all of the services currently available for persons with disabilities to be made available in alternative, accessible formats and be kept current.

Barrier: It will be difficult to be sure that the informed consent process was adequately explained.

Recommendation:

A satisfaction survey process should also be developed to include monitoring and incorporating into an oversight process (i.e., ombudsman).  Contracted services would also be included in this requirement.

Barrier: State agency case-managers, hospital discharge planners, and other providers do not know of the community options and/or make assumptions about an individual's ability to live in the community.

Recommendations:

1.  Statewide training should be implemented to assure that all providers and state agency staff are aware of Olmstead and its implications.  The Olmstead Task Force will take the lead on this initiative.  Consumer input should assist in identifying the type of training and its content (e.g., video, CD-Rom).  There is a wide audience for this training:

a)  Those workers employed by the Divisions of Aging, Family Services, Medical Services, Comprehensive Psychiatric Services, Alcohol & Drug Abuse, MRDD, Vocational Rehabilitation, State Schools and Sheltered Workshops, the Bureau of Special Health Care Needs and any state funded entity providing services to eligible persons with disabilities must participate in a one-day statewide training conference and periodic follow-up training events.

b)  Those workers employed by vendors contracting to provide services for the State Divisions and Agencies (i.e. Home health agency staff; hospital discharge planners and social service directors; private habilitation center and ICF-MR workers; nursing home administrators and social service directors; direct service personnel from the Area Agencies on Aging, the University of Missouri Extension Service, Centers for Independent Living, public administrators and other providers) must participate in the same training conference and follow-up training events.

c)  At each county site, trained volunteers and staff, hosts and discussion leaders, will be representatives from the local Center for Independent Living, AARP, People First, DD Regional Advisory Council, Brain Injury Association and any other community-based service and/or advocacy organizations.  Wherever possible, individuals currently living in the community with state supports who have also lived in institutional settings will be on hand to share their first-hand experiences.

2.  This training session should be statewide.  Training efforts should encourage networking with agencies that provide services and get information (e.g., how to get Personal Care Assistant, transportation).  Each agency is responsible for obtaining continuing education accreditation for their training programs.

Barrier:  There is a significant turnover in state providers and state staff.  Due to this turnover, there will be a continuous need for training of providers and state staff.

Recommendation:State agencies should develop and conduct statewide train-the-trainer sessions.  Resource manuals will be developed to allow those trained to conduct training in their own region.  Consumer input must be a part of this training effort.  The material can also be available on the website, in a manual, and on CD-ROM to assure that all individuals receive the training about informed choice.

Barrier: There are many consumers who have questions about their rights and also who do not know where to turn for answers.

Recommendation:  A 1-800 hotline or 211 number should be disseminated.  Information needs to be marketed to the public to reach those that are not currently in programs.

Barrier: It may be hard to determine if a true informed consent process was conducted with persons with disabilities who seek services.

Recommendation:  A Leave Behind Letter from a State Authority and the Informed Choice Sign-Off forms and brochures explaining the details for accessing state services will be provided by each government entity.

Recommendation:  The state agencies should develop a verification process with the agencies to assure that informed choices was provided.

Barrier: Often decisions are made without the assistance of an advocate for the individual with a disability.  The individual with a disability may feel overwhelmed and need someone to advocate for them.

Recommendation:

This multidisciplinary team shall be composed of at least the following:  a professional as required by law and an independent living advocate (a person knowledgeable about independent living).  An additional advocate of the person with disabilities' choice may be included if he/she so chooses.

Barrier: Individuals often do not understand the grievance and/or appeal process.

Recommendation:  A clearly defined appeal procedure shall be available to all participants in state programs. The steps to ask for an appeal should be clear and easy to follow.  As a part of the informed choice process, each participant must be informed about these procedures and where they may receive assistance with the appeal and grievance process.

Timelines and Responsible Parties to Implement Recommendations:

The following table summarizes recommendations, identifies agency(ies) responsible for planning and initiating activities to realize each recommendation, and identifies the calendar year in which the results will be achieved:  The code for state agencies is:

• DESE - Department of Elementary and Secondary Education
• DVR - Division of Vocational Rehabilitation
• DMH - Department of Mental Health
• ADA - Division of Alcohol and Drug Abuse
• CPS - Division of Comprehensive Psychiatric Services
• MRDD - Division of Mental Retardation/Developmental Disabilities
• DOH - Department of Health
• AHIP - Adult Head Injury Program
• DSS - Department of Social Services
• DA - Division of Aging
• DMS - Division of Medical Services
• RSB - Rehabilitation Services for the Blind

Recommendations:

1a.  Improve the assessment and screening process done before a person enters an institution and periodically thereafter.  Add informed choice components to assure the individual knows all of the options and rights.

1b.   Staff must review all applications for nursing home admission or institutional placement, including ICF/MRs.  Increase the screening and training so that these staff can screen for disability and refer persons to DA, CILs, CMHCs, Regional Centers, or at least provide them information upfront about service options that might be available before the person is admitted to the nursing home or other segregated settings.

2. The commission should designate a lead agency or entity that would be responsible for arranging for a single source document that outlines all of the services currently available for persons with disabilities to be made available in alternative, accessible formats and be kept current.

3. A satisfaction survey process should also be developed to include monitoring and incorporating into an oversight process (i.e., ombudsman).  Contracted services would also be included in this requirement.          

4a.  Each department should implement statewide training to assure that all providers and state agency staff are aware of Olmstead and its implications.  Consumer input would be invaluable in developing the training.  To the extent possible, intra-agency training programs should be developed.

4b.  This training session should be statewide.  Training efforts should encourage networking with agencies that provide services and get information (e.g., how to get Personal Care Assistant, transportation).  Each agency is responsible for obtaining continuing education accreditation for their  training programs.

5.  State agencies should develop and conduct statewide train-the-trainer session.  Resource manuals will be developed to allow those trained to conduct training in their own region.  Consumer input must be a part of this training effort.  The material can also be available on the website, in a manual, and on CD-ROM to assure that all individuals receive the training about informed choice.

6. A 1-800 hotline or 211 number should be disseminated.  Information needs to be marketed to the public to reach those that are not currently in programs.

7a.  A Leave Behind Letter from a State Authority and the Informed Choice Sign-Off forms and brochures explaining the details for accessing state services will be provided by each government entity.

7b.  The state agencies should develop a verification process with the agencies to assure that informed choices were provided.

8. This multidisciplinary team shall be composed of at least the following:  a professional as required by law and an independent living advocate (a person knowledgeable about independent living).  An additional advocate of the person with disabilities' choice may be included if he/she so chooses.

9. A clearly defined appeal procedure shall be available to all participants in state programs.  As a part of the informed choice process, each participant must be informed about that procedure and where they may receive assistance with the appeal and grievance process.

NOTE:  It was recommended that adding educational or awareness component to MRDD for persons who may have been denied services in the past due to changes in the eligibility criteria.

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Budget Action, Federal Action, and Statute Changes.

Needed Budget Action:

• A toll free informational phone hotline should be developed and marketed.
• Training for all agency and provider staff.

Federal Action:

None required.

Statute Changes:

• 1B. Screening for all nursing home applications.

[ Index | Acknowledgements | Introduction | Activity 1 | Activity 2 | Activity 3 | Activity 4 | Activity 5 | Activity 6 | Activity 7 | Activity 8 ]

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