Community Integration for People with Developmental Disabilities
Responding to the desires of individuals’ with developmental disabilities to move from large institutions into less restrictive settings has been a focus of the Family and Social Services Administration - Division of Disability, Aging and Rehabilitative Services (DDARS) for many years.
A recent analysis indicated that the rate of reduction in Indiana state operated institutional census during 1993 - 2000 was 9%, well over the national rate of 6% (Braddock and Hemp, 2000a).
Individuals with developmental disabilities were afforded the opportunity to move to community based settings when the state closed Central State Hospital - 1994, New Castle State Developmental Center - 1998, and Northern Indiana State Developmental Center - 1998.
In addition, several large, private intermediate care facilities for the mentally retarded (ICFs/MR) were closed in 1998, offering individuals opportunities to live in smaller, community based apartments and houses. During 1993 - 2000, Indiana's large private ICF/MR resident census decreased by 12% (16% from 1997 - 2000) (Braddock and Hemp, 2000a)
At the time of the New Castle transition, Indiana State Senator Beverly Gard reminded and cautioned everyone that "moving individuals out of New Castle is not the end, it is the beginning." Those words absolutely reflect DDARS’ position. Individuals have moved into communities with the cooperation of state staff, residential service providers, case managers, consumers, families, advocates and communities. With the continued help of all those interest groups, FSSA/DDARS is committed to enhancing and improving needed supports to make the lives of those individuals ever more rewarding and safe.
The Community Integration Action Team has assembled three Subcommittees to react and respond to FSSAs plans for continued community integration of individuals currently living in institutions. The Action Team has articulated 9 questions to be addressed during the course of planning. This document reflects the efforts of the Subcommittee for Community Integration of People with Developmental Disabilities to respond to those 9 questions.
1. Review current systems of service delivery, plans and resource allocations.
Services range from services in the state developmental centers (most restrictive) to services in large private ICFs/MR, to group homes, waiver services and state supported community-based services. Some individuals with developmental disabilities are in nursing homes.
Types of services typically found (but not limited to) all waiver programs include:
- Case management, services including arrangement of the provision of services, service coordination, crisis intervention, case planning, follow along to ensure quality improvement.
- Case management assessment including assessment and referral, reassessment when necessary.
- Personal assistance/attendant care.
- Respite care
- Adult day care
- Residential-based habilitation.
- Day habilitation which may include provision of meals and snacks, personal assistance with daily living skills and supervision, medical care, transportation, counseling.
- Prevocational services
- Supported employment.
- Environmental modifications such as lifts or ramps, grab bars, widened doors.
- Assistive technology.
- Personal emergency response system.
- Physical therapy
- Occupational therapy
- Speech/language therapy.
- Transportation to and from appointments/outside activities in the plan of care for each recipient.
DDARS has requested the following funding for the next biennium. This request is to predominantly fund services and residential settings in communities.
| Program | Budget Request 2002 | Budget Request 2003 |
|---|---|---|
| Division of Disability, Aging, and Rehabilitative Services | $109,562,863 | $121,763,653 |
| State Developmental Centers | $60,324,070 | $60,324,070 |
This is a $19,273,236 increase over "base" funding for 2002 and $31,474,026 over "base" for 2003.
2. Identify array of services currently available to persons with disabilities. Assess the current/future need for existing/new services.
The numbers of MR/DD individuals currently receiving services identified by program areas (BDDS/Aging and In Home Services/OMPP/DMH) are:
| Program | Number |
|---|---|
| Individuals in State Developmental Centers | 608 |
| Individuals in large, private ICFs/MR(11 Facilities) | 832 |
| Individuals in group homes | 3795 |
| Individuals in state hospitals | 160 |
| Individuals in nursing homes (from OMPP 8/25) | 4396 |
| Individuals on Individual Community Living Budgets (100% State funds) | 3315 |
Individuals receiving waiver services:
| Type of Waiver | Number |
|---|---|
| ICF/MR Waiver | 2294 |
| Autism Waiver | 194 |
| Medically Fragile Children | 127 |
3. Assess the demand and desire for receiving these in a less restrictive setting.
The number of individuals with developmental disabilities (unduplicated count) who have requested services through Medicaid waivers are:
| Type of Waiver | Number |
|---|---|
| ICF/MR Waiver | 4799 |
| Autism Waiver | 424 |
| Medically Fragile Children | 164 |
The number of individuals with developmental disabilities who have requested services through the BDDS Field Offices is: 2077
Some of these individuals are receiving no services through BDDS. Others are receiving some services and have requested different or additional services.
4. Define short and long-term barriers to achieving total community integration.
There are several barriers to achieving total community integration. In this document we will explore: workforce, accessibility, funding and family related issues.
- Workforce - There are concerns that Indiana’s pool of potential direct service staff lacks the competence, to provide adequate care and services to assure consumers’ health and safety. By competence we mean adequate, meaningful training and experience. Currently, we do not have a consistent set of minimum qualifications for someone to be hired as a direct service worker. These are the individuals who see and interact with consumers the most. We must have a competent, qualified staff.
Part of the issue here is the sheer numbers of individuals needed to provide direct services to individuals with developmental disabilities. This is an operation that, in many cases, encompasses 24 hour, 365 days per year staffing. Agencies serving individuals with developmental disabilities also compete with other health care/helping agencies. The pool is deficient nationally, as well as in Indiana.
Another issue is salaries. Staff are often paid bare minimum wage. Even though these are the caregivers to whom we entrust the lives of some of our most vulnerable citizens, there is not parity of wage to difficulty of service compared to other community, minimum wage jobs.
- Accessibility - Adequate, appropriate accessible housing and transportation is, again, a universal issue. Transportation is needed to get to and from services, employment and community activities. Housing needs to be developed based on universal design. Architects and developers need to realize that housing accommodations that make it easier for an individual with disabilities to maneuver can also be good for the general population.
- Funding - People don’t leave our system. Many people with disabilities are living longer due to advances in medicine. Since more and more people are available to receive services, there is a greater demand on limited funding.
It is also a reality that converting from facility based services to community based services often is more expensive in the beginning because both systems need to run simultaneously for a time. Once an entire facility is converted, funding returns to approximately the pre-conversion rate.
In addition, history has demonstrated that as the economy weakens, funding for people with developmental disabilities suffers. With projections of decreased state revenues, there is rising concern about the continuation of the progress we have made toward providing services to more eligible consumers.
- Parents aging out - Braddock and Hemp, 2000a have reported that 28%, 11,214 of consumers living with family caregivers live with individuals aged 60+. As parents and individuals with developmental disabilities age, everyone’s needs get more complex.
We also acknowledge that there is a need to provide adequate education/information to families so they can make informed choices regarding moving their loved ones from facility based to community based services.
5. Describe, plan for processes that provide qualified individuals with disabilities with opportunities for informed choices.
Since 1999, IC 12-11-2.1-3 has stated that "all services provided to an individual must be provided under the developmentally disabled individual’s individual service plan." DDARS’ goal is that all Individual Service Plans be developed through a person-centered planning process.
For those individuals receiving services in the community, a person-centered plan is developed for each individual from which the individual service plan is developed.
Person-centered planning is being done for each individual residing in a state developmental center.
Person-centered planning has yet to be done on a large-scale basis for those residing in large private ICFs/MR, group homes or nursing homes.
Person-centered planning is used as a tool for change and which includes the following elements:
- identifying an individual’s strengths, gifts, skill, talents, and contributions;
- full and active participation by individuals in decision-making activities that affect their lives;
- individuals defining what is meaningful in their lives and what really matters most to them;
- choice among flexible, dependable services that meet each individual’s immediate needs and support each individual’s goals and aspirations for a lifestyle that affords personal control, informed decisions, dignity and respect;
- negotiating obstacle and issues that emerge to ensure that resulting activities are consistent with the individual’s preferences and goals;
- individuals and family members partnering with service providers to explore creative options to meet the preferences and goals expressed by the individual;
- using generic resources presently available in the community to complement agency resources;
- strategies and resources used to support the desired outcomes and needs of individuals are developed to increase the likelihood that the individuals will increase control over their lives, develop relationships, and participate in community life;
- revising the plan as new opportunities and obstacles arise or when significant changes occur in an individual’s life.
DDARS has contracted with Indiana’s University Affiliated Program, the Indiana Institute on Disability and Community out of Indiana University, to develop and provide training on person- centered planning. Invitees and anticipated attendees include personnel associated with: Area Agencies on Aging; Vocational Rehabilitation Services; Bureau of Developmental Disabilities Services; schools; community rehabilitation programs; independent case managers; Protection and Advocacy Services; Independent Living Centers; D&E teams; and others interested in person-centered planning. Those trainings will be presented at 12 sites statewide from February 22, 2001 through April 26, 2001.
The Institute also plans to develop and present a 3-day intensive facilitator training on person- centered planning approaches. The purpose of this training will be to prepare individuals to facilitate person- centered planning.
The individual service plan is an attempt to translate the consumer’s long-range and short-range goals into reality by creatively accommodating the existing resources, both financial and human, in the form of strategies geared toward the accomplishment of such goals.
6. Define, propose any needed changes to assure that qualified individuals can be placed in more integrated community-based settings.
The Comprehensive Plan for the Design of Services for People with Developmental Disabilities - July 1998, submitted by the Indiana SB 317 Task Force, suggested the following needed changes:
- Redirecting funding away from congregate settings to those integrated residential, day services and employment settings based on the choices of individuals/families and the principles of person-centered planning.
- congregate settings to individualized, supported living arrangements;
- redirect funding from congregate employment and day services to individualized support in typical businesses and community settings;
- Redirect funding streams and processes to early intervention and family supports.
- Building the community capacity to provide individualized and person-centered services in typical community settings across Indiana.
- Develop capacity and provide supported living options in all community settings;
- Offer training and technical assistance to community providers on best practices;
- Expand community capacity related to crisis intervention;
- Provide training on leadership and choice making and invest in self-advocacy.
- Secure financial resources to respond to the demand for services of persons with developmental disabilities and their families.
- Seek additional funding to stabilize the current funding system (long range funding plans for expansion of access to services).
- Funding spent in response to actual needs and analysis and continuation of services for those already in the system.
FSSA and DDARS have embraced these suggestions. Planning that progresses needs to be evaluated against these points.
7. Develop strategies to achieve the needed changes.
Quality improvement mechanisms are currently in place in each SDC. Each SDC currently has a Risk Management Review Committee that analyzes, on a monthly basis, incident/injury trends data, identified high-risk consumer data, and monthly outcome reports reflecting data gathered for each identified quality indicator in place. The purpose of each SDC’s quality improvement/risk management program is to ensure all safety and support provisions are optimally implemented and maintained. Another vital purpose of these Committees is to guarantee the implementation of systemic interventions and to make corrections that respond to potential and actual incidents that compromise health and safety standards. These Committees are set into place to continually strive to promote maximization of consumers’ quality of life by tracking data, identifying patterns and finding appropriate resolution to adverse individual incidents/events.
There are currently in place a number of Quality Improvement techniques addressed and utilized in each community program. These QI efforts support all community program activities conducted that are in place to enhance the quality of life of each individual deemed a consumer of DDARS services. DDARS provides a commitment of assuring that both the quality of services and the safety of each individual participating in community programs are carried out in the least restrictive, safest and most appropriate setting possible.
In community settings, policy of DDARS’ programs dictates that many concerns regarding abuse or neglect are appropriately handled through referral to Adult Protective Services, Child Protective Services or are handled by resolving concerns of risk management through the BDDS Incident-Event reporting system (a requirement of DDARS/BDDS programs) to ensure that all significant issues regarding risk management (the health and safety of individuals) are brought to the attention of support and executive staff of DDARS. In some way, all critical incidents and those lesser significant events/incidents involving consumers, (those indicating a negative trend/history analysis and or those that are considered to be red-flagged issues) are addressed immediately by DDARS executive/support staff. Several other internal processes exist within BDDS and are utilized to assure quality improvement. Examples include:
- The requirement of each provider to have an approved application for certification on file.
- The requirement of each provider to have their own internal QI system in place.
- A system in place that requires independently contracted diagnosis/evaluation information for each consumer.
- Required information regarding the quality of life as regards deinstitutionalized consumers who receive services out in the community (data from the Center for Outcome Analysis).
- Annual review by OMPP staff regarding LOC and other identified problem areas as determined by case managers and other BDDS staff.
- A system in place with DDARS/BDDS that has staff who serve as quality monitors whose job is to investigate, follow-up on problems/incidents and provide some sort of resolution to each situation.
- A system in place which requires on-going training for field staff in reporting protocol (investigative procedures), assessment and use of proper documentation to ensure resolution.
In summary, quality improvement systems are in place and functioning in both the community and in State Developmental Centers throughout the state. These systems are now being monitored through the Bureau of Quality Improvement Services of DDARS. A draft business plan (to determine how BQIS does business internally) has been submitted for consideration. During October 2000, the Bureau for Strategic Support Services trained over 300 individuals statewide on the enhanced incident reporting process. This Bureau will continue to be available as a resource for remote, statewide training and technical assistance.
DDARS contracted to have standards for provider quality be developed. Those standards are presently being piloted and refined.
In October and November 2000, DDARS implemented an Enhanced Incident Reporting process to help ensure the health and safety of consumers. In addition, a Proposed Rule for Supported Living Residences - Fire and Life Safety Standards was published in the Indiana Register on January 1, 2001.
Family Support services should be considered for enhancement. Family support services include: services, supports and other assistance provided to families with members with disabilities that are designed to: strengthen the family’s role as primary caregiver; prevent inappropriate out-of-the-home placement and maintain family unity; and reunite families with members who have been place out of the home, whenever possible. Such services may include: respite care; rehabilitation technology; personal assistance services; parent training and counseling; support for elderly parents; vehicular and home modifications and assistance with extraordinary expenses associated with the needs of individuals with disabilities.
In their recent report, Developmental Disabilities Services in Indiana: Assessing Progress Through the Year 2000, Braddock and Hemp found that 57% of the estimated 70,787 children and adults with developmental disabilities in Indiana, 40,550 individuals, reside with family caregivers. In 2000, the number of families supported through family support activities were 2,400. Family support spending per capita (of the general population) in each of the four comparison states (Michigan, Illinois, Massachusetts, and Minnesota) was 30 to 80 times the per capita spending level in Indiana.
DDARS has initiated the process to solicit organizations interested in providing diagnostic and evaluation services, intake services and some case management services for individuals with developmental disabilities. This is DDARS’ effort to have a single point for consumers and families to call when in need of initial evaluation and interim case management services.
DDARS is also considering contracting with a provider (or providers) to deliver immediate crisis assistance services. Part of the contract might cover immediate access to placement outside of the individual’s current environment. This could be an inpatient setting or some other type of approved placement. An individual who was placed temporarily outside the current environment would receive all needed services as part of the crisis assistance – room/board, supervision, medication, therapies, living skills training, etc.
Part of the contract might cover immediate access to crisis assistance within the consumer’s current home environment, when this is appropriate. In this type of assistance, BDDS would reimburse the contractor only for services actually delivered by their crisis specialist. The individual’s other services would continue to be delivered and reimbursed as usual, if needed.
The crisis assistance contractor would be required to work closely with the consumer’s other providers, including collaborating with the consumer’s behavior specialist, to achieve on-going results. Part of the contractor’s responsibility could be to assure that an appropriate behavior plan was in place and that all direct care staff were trained to implement that plan before crisis assistance ceased.
BDDS consumers and providers should benefit from the availability of crisis assistance services. Not only could this service provider offer immediate help when a crisis occurred, but could assist in reducing the number of crisis situations by identifying what may precipitate a crisis for a particular individual, then shaping a behavior plan and training staff to address these. These services might also offer the potential to save money in the long run by alleviating some of the acute case needs.
Another strategy being considered is to define eligibility for Medicaid waivers broadly enough to include most individuals with developmental disabilities. As noted in question 2., 3315 individuals are receiving services funded by 100% state funds. If more people were eligible for the Medicaid waiver, not only would consumers receive adequate and appropriate services, but also DDARS would be able to use its resources to fund a portion of services required, as opposed to funding 100%.
8. Develop a plan of action for moving capable individuals into community-based settings.
As mentioned earlier, DDARS has implemented annual person-centered planning for all individuals living in FWSDC and MSDC. This process is somewhat modified from PCP conducted for individuals living in communities because there are fewer things over which individuals have choices. However, it does give the individual, family, and staff an opportunity to approach programming for the individual differently. If the program can be developed based on the individual’s skills, talents, abilities, and desires, it is more likely to be successful.
Since 1998, 677 individuals have moved into less restrictive settings:
| Facility | Number of individuals moved |
|---|---|
| New Castle State Developmental Center | 164 |
| Northern Indiana State Developmental Center | 50 |
| 3 Large, private ICFs/MR | 116 |
| Fort Wayne State Developmental Center | 99 |
| Muscatatuck State Developmental Center | 98 |
| Additional individuals on deinstitutional Medicaid waiver | 150 |
When individuals request to leave institutions, the person-centered planning process for community living begins. The process starts by discovering the individual. A Lifestyle Plan is developed. The Lifestyle Plan identifies the individual’s wishes; desires; skills; things the individual enjoys; things the individual doesn’t enjoy, that precipitate undesirable behaviors.
From the Lifestyle Plan, a Support Plan is developed. This articulates what needs to happen in the individual’s life in order to progress toward the wishes and desires of the Lifestyle Plan.
The Individual Service Plan is then developed to identify who will do what when. This includes using existing supports, natural or paid that are consistent with the individual’s achieving identified goals.
This planning is done one person at a time. There is no "cookie cutter" service plan. Each one is unique.
There is an array of residential living options from which individuals can choose to live. Included in that array are ICF/MR Group Homes located in local communities statewide. These settings are licensed by the Community Residential Facilities Council. There are 4 licensure types of group homes for adults.
Currently DDARS is considering an opportunity that would allow 404 individuals living in "sheltered living" homes, the least restrictive/supervised settings, to move into community apartments and houses utilizing Medicaid waiver funding for needed, appropriate services. This would then allow the homes with those 404 "sheltered living" beds to be converted to "basic developmental" homes. This would provide an opportunity for individuals living in large, congregate settings to move into neighborhoods and to participate in community activities. It would also provide individuals currently living in communities, who need more direction and supervision, an opportunity to receive the appropriate amount of support without being placed in a large, congregate setting.
9. Develop a strategy for monitoring, evaluating these strategies and the plan of action.
The Bureau of Quality Improvement Services has developed a draft business plan and corresponding working plan that establishes specific mechanisms to monitor the quality of services provided throughout all program areas. These mechanisms, discussed below, are designed to provide a more comprehensive assessment of the quality of care being provided in the community as well as in the state developmental centers.
Provider Standards/Quality Monitors
The Bureau of Quality Improvement Services is in the process of developing an enhanced quality monitoring system for community services. This system includes quality monitors who will survey community residential and day providers annually, using provider standards as guidelines for the survey. These provider standards will require that providers present sufficient evidence that minimum safeguards are established to protect the health, safety and civil rights of consumers served, that staff is appropriately qualified, and that the physical environment is safe, well maintained, and conducive to a positive lifestyle in the community.
Establishment of Committee Structure
One function of the Bureau of Quality Improvement Systems is to collect and analyze aggregate data across all program areas to identify significant trends and systemic issues. This information is then used to develop recommendations that address policy, programmatic, and health and safety issues. A committee structure, described below, is being developed to complete this function (see attached chart). The data collected includes the number of individuals served by program area, as well as the number of individuals moving from congregate settings to more integrated residential and day services. This information will be tracked to monitor how quickly individuals are being moved.
The committee structure is designed to reflect input from three major constituencies: DDARS management, programs, and recipients/consumers/community. Each committee will focus on a specific aspect of quality improvement functions. Two subcommittees (Risk Management and Morality Review) have already been established. Six more committees are in the process of being formed. The functions of each committee are summarized below.
- Quality Improvement Executive Council – will serve as the strategic planning and action approval body for DDARS QA direction and activities
- Quality Management Committee – will implement QA structure, operations, and activities, and collect and analyze data provided through subcommittees.
- Utilization Management Subcommittee – will review aggregate consumer satisfaction data, length of stay statistics, waiting list information, compliance issues and reimbursement.
- Consumer/Community Advisory Subcommittee – will function as a voice for community/consumer input and concerns related to the actions of DDARS.
- Outcome Evaluation Subcommittee – will select appropriate outcomes, which are based upon empirical evidence and accepted practices, to assess the agency’s progress.
- Standards Subcommittee – will review provider standards, amend existing standards and develop new standards as necessary.
- Risk Management Subcommittee - reviews aggregate data, including data from the enhanced incident reporting system, that addresses risk management issues to identify trends and develop recommendations for changes.
- Mortality Review Subcommittee - retrospectively reviews deaths that occur in State Developmental Centers and in the community to identify trends and/or systems issues and develops recommendations based on these reviews.
Analysis of Enhanced Incident Reporting
The enhanced incident reporting system, discussed in #7, is another tool for monitoring the health and safety of individuals receiving services in the community. The Bureau of Quality Improvement Services, through the Risk Management Subcommittee, reviews aggregate incident information to identify trends and develop systemic recommendations that help ensure the health and safety of individuals receiving services in the community.
Development of Quality of Life Instrument
While the mechanisms discussed above monitor health and safety as well as quality of services, measuring the quality of life of individuals receiving services must be completed to determine how clients view the system of care. A sample of clients will be surveyed annually, with results analyzed to develop policy and program recommendations.
