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This publication gives the Council's position statements on the following issues: Transportation; Individual and Family Support; Education; Medicaid; Consumer Driven Managed Care; Justice/Legal System; Supported Living Recommendations; Employment. Statements are reviewed and approved by full membership, and guided by the council's mission and the DD Act.
The Governor's Council, when appropriate, develop position statements of principal which provide direction to and the value-base for the Council's public policy work. Council position statements are used internally to guide decisions on requests for funding and support for legislative and program proposals and externally to ensure that Council members and staff speaking on behalf of the body are able to consistently represent the same view. These statements are reviewed and approved by the full membership, guided by the Council's mission and the DD Act.
Freedom of movement is a fundamental right in our society. It is an essential component of any effort to enable citizens to live independently; to engage in productive self-sustaining activity; and, most importantly, to be fully integrated within their communities. All components of a transportation system must meet the needs of citizens in an accessible and affordable manner. However, the right to freedom of movement related to transportation, remains a largely unfulfilled promise for citizens with disabilities for the following reasons:
1) Many people with disabilities are not able to provide independent mobility for themselves. According to the GPCPD' s 1990 report a majority of adults with disabilities continue to rely primarily on their parent's car for transportation.
2) Public transportation systems are under funded and have not been designed or built to include people with disabilities. This is a even greater problem in rural areas and smaller communities where public transportation is lacking or extremely limited.
3) Current federal and state policy does not promote the coordination of publicly funded transportation services provided by not for profit organizations to maximize resources for transportation for people with and without disabilities. (i.e. 16b-2 programs funded vehicles)
4) Paratransit services often do not meet the identified needs of people with disabilities and promote segregation.
Therefore, it is the policy of the Governors Planning Council for People With Disabilities that all people with disabilities, including those in rural areas, should have access to affordable transportation services that enable them to travel to any destination of their choice. To attain this goal, we believe that:
1) All publicly funded or publicly regulated transportation services must be in full compliance with the ADA as soon as possible and must be architecturally, physically (mechanically) and programmatically accessable to people with disabilities.
2) Government at all levels should develop and provide stable funding for accessible and affordable transportation options, including paratransit, for people with disabilities and others who are dependent on public transportation.
3) Federal, State, and local transportation authorities and providers should adopt policies which address barriers and promote the coordination of publicly funded transportation services particularly in rural communities.
4) Local transportation authorities, through consultation with knowledgeable consumer groups, must provide education to transit personnel to sensitize them to the transportation needs of people with disabilities, as well as "user-side training" for people with disabilities.
Adopted by the Governor's Planning Council for People with Disabilities on October 20, 1992
The American family is diverse and changing resulting in an increasing need for individual and family supports that are flexible and responsive. People with disabilities and families of individuals with disabilities are often faced with extraordinary physical, economic and emotional challenges that may necessitate the provision of supports and resources in order to promote their independence, productivity and full participation in all aspects of community life. However these supports and resources are often not available and those that are not always appropriate for the following reasons:
1) Many current services have been designed and evaluated in isolation of the opinions and choices of people with disabilities and families and too often do not look at the needs of the family as a unit.
2) Existing state programs have not always been adequate to provide supports that help keep people at home and out of institutional placements.
3) Typically families and individuals do not have adequate information on how to access services and have not benefited from fragmented efforts to conduct research, and training.
4) Supports that are available are not found in all areas of the state and are not often coordinated with other resources and generic community services.
Therefore it is the policy of the Governor's Planning Council for People With Disabilities that people with disabilities and families have access to a comprehensive coordinated system of supports that advances the principles of choice and self determination. To achieve this goal we believe that:
1) Individual and family supports must be provided, designed and evaluated based on the needs and choices of individuals and families. Further, these supports must be made available in a way that respects the right to maintain family relationships both when the member with a disability is living at home and when the member is an adult who lives or wants to live independently.
2) Support services including cash subsidies must be made available to individuals with disabilities and families to prevent institutional placement resulting from financial or caregiving stress.
3) Information and training must be provided to empower individuals and families to access needed supports. Efforts to conduct comprehensive research, training and staff development in individualized support services must be increased.
4) A comprehensive, coordinated system of supports must be established in all areas of the state. The system should avoid duplication of services; use existing resources and generic services more efficiently and preventing gaps in services.
Adopted by the Governor's Planning Council for People with Disabilities on February 16, 1993
For students with disabilities, as with all students, the quality of their experiences in school is a crucial component in achieving outcomes of independence, integration and productivity. Currently best practice calls for the education of students in integrated settings in their neighborhood schools. Federal law mandates that the educational system serve students in response to their individual educational needs in the least restrictive environment. However, students with disabilities often leave school without the skills, experiences and supports they need to live, learn, work and play as valued citizens in their communities for the following reasons:
1) Although separate special education facilities and self-contained classrooms continue to be phased out, many students with disabilities still receive their education within such environments. Some schools are moving towards inclusion, but most general education programs in neighborhood schools are not yet programmatically accessible to all students with disabilities.
2) Personnel preparation programs at the university level lack appropriate and adequate curriculum addressing the full spectrum of integrated/inclusionary educational support services as well as quality training in specialized disability areas. There also exists a significant lack of access to ongoing in-service training for current teachers and support personnel.
3) Special education services and needed supports are not always adequate and not always provided in the regular classroom due to inadequately written Individualized Education Plans (I.E.P.),lack of commitment at the administrative level and funding barriers.
4) Schools, and local vocational rehabilitation agencies need to improve their capacity to foster and connect with necessary specialized and generic community support systems. These systems are needed for the successful transition of students with disabilities to further education or training opportunities or to job placement and community living.
Therefore, it is the policy of the GPCPD that integration and inclusion be an intrinsic value and underlying philosophy by which we educate all students within their neighborhood schools. Furthermore there should be adequate funding and resources for personal and services to provide a free and appropriate education. To achieve this goal we believe that:
1) Information and awareness regarding the concepts and values of inclusion and integration need to be provided to the community-at-large. Further, as these concepts are introduced into a school district, there must a coordinated effort involving all parents, students, regular and special education teachers, assistive personnel, administrators and school board members in a partnership for educational policymaking and planning.
2) Conceptually, a three-pronged approach should be implemented to achieve successful inclusion and integration for regular and special education students. First, university programs need to restructure regular and special education curriculum into one system and provide quality training in the various specialized disability areas. Second, local school districts need to provide access to on-going in-service training to generate receptivity and to nurture continuing support of inclusionary programming for all teachers and relevant personnel. Third, teacher certification and licensing needs to be restructured to ensure that all educators are well prepared to constructively work with a wide range of students.
3) Special Education services and supports in each child's I.E.P. should provide for accommodations including assistive devices, augmentative communication systems and current technology as needed, as well as speech, occupational and physical therapy beginning in the pre-school years. In addition, any consultations, services, or supports needed to meet the emotional, social or learning needs of each student should be brought into the general education environment. Positive administrative decisions can be encouraged by examples of successful implementation at the local level. The removal of funding barriers will necessitate effective collaboration between federal, state and local agencies/organizations.
4) A post school outcome of a valued lifestyle in the community requires having high expectations for each students ability to learn and for their eventual participation in adult society. For students with disabilities to reach their maximum potential as adults, effective inter- and intra-agency collaboration is required. Transition planning should begin early and should connect young adults with disabilities to appropriate adult and community services and supports and necessary follow along to assure that students leave school with a job or plans for further education, a place to live and a network of friends. Students leaving school should be tracked to determine post school outcomes.
Adopted by the Governor's Planning Council for People with Disabilities on October 26, 1993
Medicaid is a joint federal and state program that is the major source of funding for services and supports to adults and children with very low incomes. Medicaid now provides health, rehabilitation, and long term care services to 4.9 million people with disabilities including 66,181 thousand Hoosiers (1994). In most cases, Medicaid is the only source of health care and long term care available for adults and children with disabilities who cannot pay for what they need. This investment in children and adults is necessary to ensure that they receive the supports they need to maintain independence and reach their full potential. Medicaid is essential health care to millions of adults and children with disabilities on SSI. The current proposals to cut Medicaid under consideration by Congress would disproportionately affect people with disabilities in the following manner:
1) A Cap on Federal Funding Growth: A cap on program growth would force the states to bear the full risk of any costs beyond the capped amount. This would lead to pressure to restrict eligibility, cut services, and reduce quality, which would affect both long-term and acute care.
2) Block Grants: If funds are block granted without specific federal guidelines and protections, states will be allowed to pick and choose how to spend the funds. This could lead to the neglect of the needs of people with disabilities.
3) Elimination of Entitlement to Services: If Medicaid is no longer an entitlement, many people will lose access to services and supports. Lack of support would result in unreasonable burdens on families, cause health and other problems, and lead to inappropriate institutionalization. Elimination of entitlement would result in rationing of available dollars and a rise in private insurance costs because of uncompensated care. Waiver programs that provide in-home services to people who would otherwise be institutionalized would be eliminated, which would decrease financial support for community based services.
Medicaid funds comprise 40% of all federal aid to the states and are the largest source of state and federal funding for services and supports to adults and children with disabilities. Therefore, changes to the Medicaid system should be made only after careful consideration of the impact that such changes will have on people with disabilities who depend on Medicaid for essential health and long term care services. Any modifications in the Medicaid program should achieve the following goals:
1) Oppose a cap on federal growth and encourage more effective strategies to reduce costs.
2) If block grants are considered, maintain guidelines and protections for people with disabilities at the state and federal level to assure standards for quality and consumer protection and allow maximum use of dollars that are directly allocated for people with disabilities by eliminating unnecessary paperwork, regulatory and administrative requirements.
3) Maintain the entitlement for people with disabilities who have no other financial support for health and long-term care.
4) Empower people and their families to make choices regarding ongoing support strategies, including such mechanisms as person-centered planning, vouchers, performance based contracting linked to consumer defined outcomes, etc.
5) Expand services by eliminating policies that prevent or discourage shifting dollars toward home and community based services and emphasizing the development and use of informal support structures so that public dollars can be used to pay for only the essential components of an individual's personal support plan.
6) Reduce the number of individuals served in institutions and other congregate care facilities through developing community capacity to provide home and community based supports to prevent future admissions to such facilities and expand options such as assisted living, and Medicaid Waivers.
7) Promote self-reliance and self-sufficiency by providing the supports needed for people with disabilities to participate fully as valued members of their communities.
8) Encourage local governments and non-governmental entities to assume greater responsibility for making citizens with disabilities an integral part of the community and for determining how decreasing public funds can be used most effectively.
9) Explore the ability of a national health care plan to reduce or eliminate the need for Medicaid and as a means for saving money while providing better care than is currently possible under Medicaid.
10) Study the fiscal impact of raising the income eligibility level for Indiana's Medicaid program and other strategies to assist low income working families and to reduce institutional costs and expand services through the provision of Medicaid funded home health care to many who now rely on CHOICE, in-home services, Older Americans Act and Social Service Block Grant funds.
Adopted by the Governor's Planning Council for People with Disabilities on August 1, 1995
America is in the midst of significant changes in the health care system. According to the Families USA report "HMO Consumers at Risk", an estimated 58 million Americans are enrolled in health maintenance organizations (HMOs) and another 81 million in other types of managed care. From 1976 to 1995 enrollment in HMOs has risen by ten fold. It is roughly estimated that 80 billion dollars a year are at stake in the competitive market of health care. These statistics show the stark reality that managed care is fast becoming the wave of the future in America.
Managed care has the potential to become synonymous with patient centered care, a flexible network of services that is based on quality and is responsive to the patient=s needs. Consumer satisfaction must be a paramount consideration if managed care systems are to live up to the goal of cost effectiveness and efficiency. Managed care will neither be cost effective or efficient if the consumer does not receive appropriate quality care in a timely manner. It is only through the consumer that outcomes related to quality and effectiveness can be measured.
People with disabilities are a small but significant sub-population of health care consumers. Managed care systems can provide an effective means of delivering services to people with disabilities if they are flexible and structured to accommodate the specific needs of each individual. Many people with disabilities have complex health care needs that require care coordination by a primary care physician and the utilization of specialist physicians. The test of an effective system is how well it serves people with disabilities and chronic conditions.
The Governor's Planning Council recognizes that managed care will be played out at the state level. This affords the Council a unique opportunity to have a strong voice in the process. Traditionally managed care providers have not served people with disabilities, which further illustrates the need for the Council and disability advocates to insure that the design of the managed care system will be based on a set of values that encompasses the following principles:
1) Consumer Participation: All stake holders including individuals with disabilities, family members, support agencies, providers, and advocates must be provided with the opportunity to assist with the design, implementation and oversight of the operation of the managed care system and plan.
2) Consumer Choice: Managed care systems/plans must provide enrollees with a choice of plans or offer affordable point of service options. However, in the event a point of service option is unavailable managed care plans have the responsibility to provide appropriate care or pay for an out of network referral if the managed care plan cannot provide a service.
Managed care systems/plans must offer people with severe disabilities and special health care needs the option of having a specialist as their Agate keeper in the system. This specialist would provide both necessary specialized services, at the specialized rate, and primary care services, at the lower primary care reimbursement rate.
3) Appropriate Definition of Medical Necessity: For individuals with disabilities, the term Amedical necessity must be defined in the broadest manner possible to ensure access to all appropriate services and supports that can enable a person with a disability to function in the community as independently as possible. The definition of medical necessity should encompass slowing deterioration and maintaining current status as well as improving or restoring functioning.
4) Fair Financing Mechanisms: Financing mechanisms should not allow cost controls to directly or indirectly constrain access to appropriate services.
5) Appropriate Services and Benefits Available: Managed care systems/plans must offer a comprehensive benefits package that meets the needs of people with disabilities and chronic conditions. This includes such basic benefits as prescription drugs, preventive and rehabilitation services, durable medical equipment, orthotics and prosthetics, and mental health services.
6) Access to Speciality Care: Consumers must be able to maintain continuity of care with their existing specialists.
Managed care systems/plans must provide for access to and the effective coordination of specialized services with other systems/supports on which people with disabilities rely.
Consumers and their family members should retain the responsibility of overseeing the provision of long term care supports i.e. community based daily living, bathing eating, transportation, attendant care etc.
7) Consumer Protection: Managed care systems/plans must not be permitted to dis-enroll any managed care enrollee/recipient regardless of the reason.
Managed care systems/plans must comply with the protections offered by Section 504 of the Rehabilitation Act of 1973, as amended, the Americans with Disabilities Act, and other civil rights statutes.
Managed care systems/plans must provide access to independent organizations that provide ombudsman and rights protection service.
Managed care systems/plans must provide participants with clear information on policies, procedures, grievance mechanisms and appeals and must ensure consumer participation in the establishment of such procedures.
Grievance procedures must contain a provision on time frames for appeals decisions including expedited review of determinations regarding urgent and emergency care.
Managed care systems/plans that utilize provider risk sharing arrangements or other incentive related to utilization of services must have established mechanisms in place for monitoring quality of care.
Managed care systems/plans must include the option for participants to dis-enroll if they are not receiving adequate and timely services.
Managed care systems/plans must be required to collect and report a uniform set of data that allows public officials and consumers to evaluate and compare performance, including longitudinal data to measure outcomes for people with disabilities.
Managed care systems/plans must be prohibited from engaging in any marketing practices that mislead, confuse, or defraud, that are unfair or deceptive practices, or that otherwise violate federal or state consumer protection laws or regulations.
8) Consumer Education: Managed care systems/plans must disclose in a clear and easily understood manner to enrollees and prospective enrollees the plans=s policy with regard to withholds, privileges, denials of payments, and any other mechanisms with a utilization/financial incentive link.
Adopted by the Governor's Planning Council for People with Disabilities on October 15, 1996
People with disabilities may encounter the justice system as plaintiffs, defendants, victims, witnesses, prisoners, probationers and parolees. In addition people with disabilities may serve as jurors or be employed as lawyers, judges or other court officials. People with disabilities experience greater problems with the justice system than others as a result of many factors. These factors can include; general discrimination, lack of knowledge about the effects of disability, lack of sensitivity to the need for accommodations and supports; insufficient legal representation, unreliable assessments of legal competency, inadequate continuity of care requirements and the lack of adequate community services and supports to avoid involvement with the criminal justice system. Population studies of people in prisons show the presence of a disproportionate number of people with disabilities many of whom are also from ethnic minority backgrounds. As a result, people with disabilities who encounter the civil, criminal and juvenile justice systems may experience problems for the following reasons:
1) Protections under the ADA and section 504 of the Rehabilitation Act are not always recognized and extended to the legal justice system.
2) Due process can be compromised by the lack of knowledge about disability and reasonable accommodations on the part of the legal justice system.
3) People with disabilities who encounter the justice system are often not aware of their rights and responsibilities, do not have adequate legal representation and are not provided with the supports they need to understand and act on those rights.
4) People with cognitive impairments and mental illness are especially vulnerable to a miscarriage of justice related to inappropriate assessment of competency and inadequate supports to insure their full understanding of the situation and charges.
5) People with disabilities who serve as jurors, judges, lawyers, and other court officials may not have access to appropriate accommodations to fulfill their roles.
The Governor's Planning Council believes that people with disabilities share with all other people the rights to equal protection and due process under the law and the opportunity to redress grievances through the judicial system. When the rights of people with disabilities are fairly and equally protected, people with disabilities must accept (like all other people) responsibility for illegal or wrongful activity. In order for a standard of fair (including mitigating circumstances) and equal treatment (including reasonable accommodations) to be realized for people with disabilities, there must be significant changes to the current system in the following areas:
1) Training about disability for law enforcement personnel including judges, public defenders, district attorneys, corrections officers, police and probations officers. Training should focus on understanding the impact of disability, ADA, skill in communicating with people with disabilities and understanding of stereotypes and stigma about disabilities unrelated to criminal activity. Further, training should help establish resource linkages between justice system personnel and the disability community.
2) Training about the legal/justice system for people with disabilities, their families and the disability community. Training should focus on individual rights, the civil, criminal and juvenile judicial process, what types of supports may be needed and how to obtain them.
3) Development of curricula at the university level for people who intend to pursue careers related to the criminal, civil and juvenile justice systems.
4) The establishment of standards that result in reliable and consistent assessment of legal competency
5) The establishment of standards that enable people with disabilities to participate fully in the judicial system including assistance with decision making when needed.
6) Development of supports and service that assist people with disabilities to avoid initial involvement with the criminal justice system.
7) Training of state and local officials within the judicial system on the provisions of the ADA related to employment, accessibility of the workplace and public accommodations.
Adopted by the Governor's Planning Council for People with Disabilities on October 15, 1996
Unlike traditional residential services supported living is about ALL people with disabilities, including those with the most significant disabilities having the opportunity to live in their own homes with their names on the lease or mortgage papers. Supported living is about all people with disabilities having a voice, choosing, where they live and with whom they live. It is about having the necessary supports so that people can participate as valued members of their communities.
Supports are flexible, responding to what the person needs and changing over time. People have choices, like the choices people without disabilities make every day, about what services they want, who will provide them, where they will live and shop. Some of the supports needed could be personal care assistance, transportation, money management, shopping training, employment supports, health care, socialization, etc.
Responding to the needs of people by supporting them in their own homes is clearly the right thing to do. It is also a reflection of strong commitments to the rights, dignity, and freedom that people with disabilities share with everyone. Increasingly, people with disabilities, with the support of their families, have expectations for a full life as participating members of their community.
Some of the lessons we have learned from people with disabilities are that: smaller is better, people like services close to family and friends, people report their lives are better when they live in their own homes, and everyone can be served in their community.
To move Indiana toward a system of flexible and responsive supports that are needed to implement a supported living philosophy, the Governor's Planning Council for People With Disabilities offers the following recommendations:
1) Build the capacity of the community to provide individualized, typical living options. A facility is not a home. Do not create more group homes.
2) Indiana should set targets and time lines for downsizing and closure of institutions. As people move out, don't let others move in.
3) People with disabilities and family members must be involved in all aspects of the planning and implementation of supported living both at the personal level and the systems level.
4) Medicaid Waivers and funding for the CHOICE- In Home Services program should be increased because these programs allow for flexible and responsive services.
5) Indiana should promote the development of new, small providers to support individualized living options. Funds should be allocated to develop services which only provide individualized services in people's homes.
6) Existing services which congregate people with disabilities should be converted to ones which provide individual supports.
7) People with significant disabilities and support needs should have equal opportunities to live within their own homes, with the supports needed and should not be required to live in facilities or use only agencies to receive services.
8) Money dedicated to residential services and supports should not be reverted to the general fund. At the end of fiscal year 1995 approximately 1.5 million dollars were reverted.
9) Indiana must make a firm commitment at the state level to supported living, to supporting people in their own homes and providing the services that are needed. Currently only 3% of Indiana's community resources are directed toward supporting people to live in their own homes. The time for change is now!
10) Adults in group homes or living with families are asking AWhen will I get my own place? Families of children are asking AWhen will we get a little help? Thousands are waiting for the supports they need to achieve greater independence and community inclusion. NO MORE WAITING LISTS!!!
Adopted by the Governor's Planning Council for People with Disabilities on April 15, 1997
Society tends to view non-contributing members with indifference, charity, or perhaps pity. Productive activity opens doors to social acceptance, companionship and important informal community networks. There is evidence that people with disabilities who are working and receiving prevailing wages are more likely to be well integrated in community jobs and are more likely to have typical jobs. 90 percent of adults with disabilities report that they are able and want to work. Yet, two-thirds of Americans with disabilities of working age are not working. In Indiana, over half (55%) of persons with disabilities surveyed in 1990 reported not working. 97 percent of adults with disabilities who were working were making less than minimum wages.
The Governor's Planning Council believes that all people, regardless of the severity of their disability, have a right and responsibility to be productive. Individuals have the right to contribute through employment as well as to their household and to their community. People have a right to choose and change their employment. Therefore, the current system must be changed and advanced so that: