TEMPLATE OF KEY ELEMENTS
WHICH MUST BE CONSIDERED WHEN DEVELOPING A
COMPREHENSIVE, EFFECTIVELY WORKING STATE PLAN FOR MOVING PEOPLE OUT OF
INSTITUTIONS AND INTO APPROPRIATE COMMUNITY SETTINGS
Prepared by the National Association of
Protection and Advocacy Systems
October 12, 1999
Introduction
In Olmstead v.
L.C. and E.W., 119 S.Ct. 2176 (1999) the Supreme Court stated loud and
clear that the denial of community placements to individuals with disabilities
is precisely the kind of segregation that Congress sought to eliminate in
passing the Americans with Disabilities Act (ADA). The Supreme Court correctly noted that unnecessary segregation
and institutionalization constitute discrimination and violate the ADA’s
“integration mandate” unless certain defenses are established. The decision presents new opportunities for
advocating for community-based services and supports for people with
disabilities.
The decision says a
state may have a defense to lawsuits challenging the state’s failure to serve
individuals in the most integrated setting appropriate if it has a
"comprehensive, effectively working plan for placing qualified persons
with mental disabilities in less restrictive settings.”
The Court did not
define a “comprehensive” plan. It seems
appropriate that a “comprehensive” plan is one that addresses the placement
needs of all individuals who are unnecessarily institutionalized or at risk of
institutionalization. A state may have different plans to address different
populations, as long as the needs of all individuals unnecessarily
institutionalized are addressed.
Neither does the Court define “effective.” It seems logical however that
an “effective” plan must have certain important elements.
This template is
designed as a tool to help advocates participating in the development of state
plans to ensure that they consider certain important elements that any state
plan should have. The template is
intended as a baseline and not as a model plan. Advocates should add to this list as necessary taking into
account the circumstances of your state.
It is important to understand that any plan that is developed will need
to be modified as circumstances change.
The state plan should be considered to be a working document that should
be reviewed at regular intervals (at least annually). The steering committee that develops the plan (including key
stakeholders) should also be the group that continues to review the plan. Forums or other methods of soliciting the
opinions of consumers, family members, providers, etc., should be held
regularly to ensure broader stakeholder input.
The guiding
principle reflected in this template is that the state must develop and enhance
community programs and services so that each individual resident can move to
the most integrated setting appropriate to meet his or her needs. The community program and service shall
promote choice, independence and dignity.
Element One: PARTICIPATION OF KEY STAKEHOLDERS IN THE
DEVELOPMENT OF THE PLAN
Stakeholders should
include representatives of those who receive, provide, administer, and monitor
disability services. Advocates need to
press state or local government officials to include all of these groups in the
process of developing the state plan.
Inclusion means more than just inviting a representative to participate,
it also means ensuring that accommodations are offered that will allow full and
meaningful participation for each stakeholder representative. For example, assistance might be provided
with regard to reading and understanding materials, holding meetings in
accessible locations, transportation to and from meetings, provision of
childcare or respite services etc.
Key stakeholders
may include, but are not limited to representatives from:
*consumer self
advocacy groups, for example, The Arc, independent living programs,
associations for the mentally ill, mental health consumer groups or for
individuals with psychiatric disabilities, groups for those with sensory
impairments, physical disabilities and AIDs,
*area agencies on
aging and other senior citizen groups,
*veterans
organizations,
*hospice programs,
* the state
legislature,
*state agencies, for
example, Department of Mental Retardation or Developmental Disabilities,
Department of Medicaid, Medicare, and Social Security, Department of Special
Education , Department of
Transportation, Department of Housing
*protection and
advocacy agencies
*developmental
disabilities councils
*community mental
health centers,
*providers of home
based care, and respite care,
*vendors of
assistive technology,
*nursing homes,
*residential
treatment facilities
*state and community
hospitals,
*the medical
community, nurses, social workers and case managers.
housing providers;
advocacy groups
Element Two: NEEDS
ASSESSMENT PROCESS
Often states do not
take the time to figure out the type and quantity of services and supports that
need to be developed in the community to support persons with disabilities, nor
is there a clear process for determining who needs services (e.g. the waiting
list is often not well defined). This
often results in a lack of community capacity which then gets used as an excuse
for not providing community supports.
Also assessments must not be shaped from a consideration of the current
availability or existence of a needed service or support.
This step in the
planning process should be done on an ongoing basis, but should not delay the
process of moving people for whom adequate supports can be readily
identified. For other people, there
will need to be more planning. For
example, serving people with complex medical needs in rural areas will require
some creative thinking. A needs
assessment would help to identify these needs and allow for adequate planning.
Individual
assessment should include:
*identification of
who should conduct the assessments, what qualifications must they have, do you
want a team, if you have a team of assessors, who must be included on that
team, and what qualifications must they have
*reasonably paced
schedule for assessing all currently institutionalized persons
*schedule for
accessing all people in the community who may be at risk of unnecessary
institutionalization
*schedule for
accessing, on an ongoing basis, new persons who develop disabilities and need
community supports
*assessments should
be conducted by qualified professionals who specifically consider such factors
as the array of services an individual needs, the types of services that could
be provided in the community, and any reasonable accommodations that might be
required to enable the individual to benefit from particular services
*part of the
assessment should include at least one face-to-face consultation with person
who is being assessed for appropriateness for community placement. At the least this consultation should
identify what the specific interests, goals, likes and dislikes and support
needs of the individual which may factor into whether community placement is
the most appropriate setting for the individual. This face-to-face consultation should be conducted using the
individual with the disability’s preferred method of communication
*the individual
being assessed for community placement must be given the opportunity to visit
and temporarily test out a choice of community services options prior to being
asked to chose where one wants to live.
*a written
individual support plan that is reviewed and revised upon the request of the
individual or guardian, and at least yearly.
*transition services
to assist the individual to make a smooth change to the community.
Element Three: DEVELOPMENT
OF NEW COMMUNITY SERVICES AND SUPPORT INFRASTRUCTURE
A comprehensive plan
should identify new and expanded community services and supports that will be
made available in the community to respond to the increased demand for these
services that will result from unnecessarily institutionalized persons moving
to the community. Advocates should
insist that as part of plan development states include improving community
service infrastructure.
Infrastructure
should include:
*health care,
personal assistance, therapy services, dental services, durable medical
equipment and other assistive technology
*architectural
modification as a community support
*respite care as a
community support
*recruitment of
health professionals, service providers and vendors to address a wide array of
needs for community supports, including, but not limited to supported living,
respite care, family support, housing adaptations, vocational training, therapy
services, medical and dental services, etc.
*training for health
professionals, service providers and vendors on topics that address recognition
and prevention of abuse and neglect, promotion of person-center planning and
community inclusion, balancing independence with health and safety concerns,
education about the ADA, special education, vocational rehabilitation and civil
rights for persons with disabilities
*competency-based certification process for service providers. In addition, to general training, specific
training with regard to individuals specific needs should be required.
*support
coordination or case management for persons with disabilities living in the
community
*policies and
procedures for the reporting, investigation of unusual incidents, and a
corrective action process to respond to abuse and neglect.
*policy on health
care decision making, including recognizing advance directives
*appeals and
grievance process for individuals living in the community and an ombuds program
for individuals to access with concerns about access to services, abuse and
neglect or rights violations
*community mental
health services
*accessible
affordable housing
*accessible and
affordable transportation
*crisis services in
the community, including a backup system for when scheduled service and support
structures fall through, 24 hour access to medical, behavioral and psychiatric
services.
*vocational services
and supported employment
*educational
programs for individuals 21 and under
*accessible
recreation and leisure
*family support
services
*public education
about community integration as a civil right
*mandatory
coordination of care for individuals moving to community placements
*If the state
contracts with a managed care entity (MCO) to provide its Medicaid services,
the state contract with the MCO must make clear that the MCO is requires to
provide these community services and supports
*contracts with
service providers should establish clear billing procedures that delineate the
specific services and supports they are expected to provide. The element is included because current
experience reveals that billing procedures are complex and often providers are
not informed of the services they are required or allowed to preform.
*reimbursement rates
for providers must be set at reasonable levels so as to attract sufficient
numbers of qualified service providers
*a program to
re-train service providers who currently provide services in institutional
settings to transition to providing services in the community
Element Four: TRANSITION
SERVICES TO PREPARE INDIVIDUALS FOR A CHANGE IN PLACEMENT
Elements to
consider in a Transition plan:
*allow individual to
request a temporary six-month hold on the institutional bed at the time of
initial community placement.
*allow preplacement
home visits and overnights
*pre-service
training for community support staff - prior to actual placement - on
individual service needs.
*choice of
alternative placements if the initial placement is discovered not to be
appropriate in first 6 months and any time thereafter based on assertion of
inadequate services or harm
*if a school age
individual is transitioning an IEP should be in place prior to the move
*each individual
shall have a “transition profile” which can be shared with community support
staff prior to the move, Including: name, age, sex, communication method,
ability and language, diagnosis, intellectual level, mobility level, hearing,
vison and dental status, mealtime patterns, nutritional needs, level of
supervision required, environmental adaptations and modifications needed,
allergies, general health condition, emergency health care needs, preferred
number and characteristics of house mates, preferred geographic location,
anticipated adjustment issues, vision for the future, safety concerns,
description of personality, skills and interests, spiritual and religious
preferences, and vocational interests.
Element Five: DATA COLLECTION WHICH IS INDIVIDUALIZED AND
TIED TO INDIVIDUAL PROGRAM PLAN
The state should
implement a tracking system to monitor the progress of each individuals program
plan. This tracking system will help
the state document progress towards implementation and identify where progress
is lagging. This will also allow the
state to identify barriers and problem solving activities at the individual and
state-wide level.
A state’s data
tracking system could be designed to collect general state-wide data and also
data which may only be meaningful to a few individual program plans. Overall data should be kept simple and
meaningful.
In order to ensure
that data is routinely reviewed, barriers are identified, and problems solved
the state may wish to create a data review team to meet monthly at the regional
level. The purpose of the meeting would
be to review the data, identify trends and issues, and implement actions to
prevent issues, solve problems, and improve trends.
Collecting data is
the first step in the process, but the most important thing is for this data to
be aggregated and reports to be developed and run on a regular basis to help inform
decision-making by program administrators.
Part of the development of a quality assurance system should be to
define what data is to be collected, who is going to collect it, which reports
will be developed and how such reports will be utilized (e.g. some data could
be tied to outcome measures and used to evaluate providers' performance).
Specific data to
collect could include:
*number of
individuals moved to the community, type of placement and location of placement
and services and supports
*numbers of
individuals returning to institutions in the first six month, one year, or five
years after placement in the community.
*incidents of abuse
or neglect, name of service provider, location of abuse, type of abuse,
resolution taken, follow-up planned.
*data on consumer
satisfaction with services and supports, quarterly, yearly, etc.
*numbers of trained
or training service providers and location of providers - reviewed for
possibility of shortage
*number of community
placements available and location of community services
*track comments
about inadequacy of services by particular providers
*track grievances,
including the issue grieved, the service provider who is the subject of the
grievance, if applicable, and the resolution of the grievance
*track the length of
time it took to get assessed for community placement
*track the length of
time between when the person was assessed as appropriate for community services
and when the individual received the needed community service
Element Six: OUTCOMES MEASUREMENT AND TARGET DATES
State should provide
specific measurable goals and these goals must be tied to resource
allocation. Time frames and outcome
measurements must also include consequences if the time frames are not met or
if the goal is not reached. One obvious
consequence is that if the state plan is not “effectively working” the state
will no longer have a defense to an ADA lawsuit for unnecessarily
institutionalizing persons with disabilities.
State plans should
not be sequential by institutional type or type of disability or age. In other words, the plan must apply the same
time frames for the community integration of people in nursing homes and state
hospitals as for those in public and private intermediate care facilities. Advocates should be wary of a state plan
that omits individuals in any of these institution or
that is sequential
in nature, thereby giving one group preference over another based upon type of
disability or institutional setting in which they reside.
Below are some
examples of specific measurable goals and target dates:
*specific numbers of people to be moved out
of institutions, specific institutions to be targeted, specific dates upon
which states will have move specific numbers of individuals.
*outcomes and goals
should be establish for each area of the plan.
For example:
- /training program for service providers will be developed by a certain
date and a certain number of service providers will have received the training
by a certain date etc.;
- /individuals who are recently in need of
community supports shall be assessed within a specific number of days and
services shall be provided to these individuals with in a certain number of
days;
- /certain number of monitors will be trained
within a specific number of days and a certain number of facilities will be
monitored by a specific date;
- /certain number of individuals who have moved
from institutions to the community will be placed in supported employment by a
specific date and a certain number of individuals will receive appropriate
vocational training by a certain date etc;
- / people living in institutions will be
reassessed for community placement appropriateness at least every 3 months;
- /state will be able to provide a certain
number of days of respite services to individuals with non-specialized needs,
within a certain number of days after the request is made, and to individuals
with specialized service needs within a certain number of days from the time
the request is made.
Element Seven: MONITORING/QUALITY
ASSURANCE
The state must
establish a method of evaluating programs at the individual and state-level to
ensure that they are effective at the individual level and that they met
certain state standards and requirements.
Quality assurance also involves improving the capacity of providers to
implement continuous quality improvement activities, including problem solving,
promotion of self-determination, and ability to problem solve.
It should be
recognized that there often are at least a couple of agencies/entities that
have some responsibility for monitoring.
This can include: service providers, personal assistants, home health
agencies, vocational providers, the Medicaid agency, licensing staff, case
managers/support coordinators etc. In
order for quality assurance to be effective, all of these should be coordinated. This can be done through a comprehensive
quality assurance plan. Such a plan
also could pull in the data collection, aggregation and reporting piece,
including who is going to collect which data, etc.
Key elements of
Monitoring/Quality Assurance include:
*regular review of
individual service plans
*monitoring teams,
which include persons with disabilities, family and community members, service
providers, an individual familiar with the range of community services
available to persons with disabilities, and a representative of the state
agency that has oversight authority for the community program
*training for
monitors
*monitors should be
given the authority to review records access community placements and services
*specific schedules
for monitoring and selection of sites to be monitored
*a meaningful self
assessment process
*confidentiality of
personal information
*specific and
detailed reporting requirements for monitors that are reviewed by the state
*service provider
and vendor training and education to ensure quality services are offered
*people with
disabilities must have access to a community ombuds program to assist
individuals work with service providers and case managers and resolve disputes
or other concerns.
*self-advocacy
training and education to consumers so they understand they have certain rights
to quality services and the opportunity to obtain ombuds assistance if these
rights are violated.
*service provider
standards, rights and expectations
*appeals and
grievance procedure that individuals with disabilities and providers may access
if rights are violated, (For example, the Medicaid Act provides specific due
process rights for services provided under Medicaid)
*training both
consumers and providers how to recognize abuse and neglect
*regulations for
reporting and investigating abuse and neglect allegations
*regulatory
penalties for abuse and neglect including a registry of service providers who
have been convicted of abuse and neglect.
*state reporting on
its progress moving unnecessarily institutionalized persons into the community
that the state is required to distribute to consumers, families, and providers.
*responsibility for
quality assurance should be vested in a person who has authority to tell
program directors his findings and this person should not be answerable to any
person in control of the programs being evaluated.
*monitoring should
involve more than just a paper review.
Monitoring should also include a face-to-face discussion with the child
about whether they feel safe, how their lives can be improved and if they are
unhappy with any person or situation in their life. Monitoring should also include a discussion with the individuals
service providers and if a child is involved, the child’s family and teacher
Element Eight: RESOURCE
DEVELOPMENT
The state should
consider the following mechanisms for increasing resources available for
community supports and services for people with disabilities:
*new waivers
development
*restructuring
Medicaid funding rules to promote community integration
*using tobacco
settlement money to enhance community supports
*passing a
state-level Mi-CASSA (Medicaid Community Attendant Services and Supports Act)
bill. Such a bill would make it possible for a state to allow an individual
eligible for nursing facility services or intermediate care facility services
to choose to use these Medicaid dollars for community attendant services and
supports.
*shifting funds from
institutions to community programs by closing down wings of large facilities.
Element Nine: The state plan shall be reviewed, revised and updated every two years or sooner if appropriate.