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Health Care

Summary

Adopted 2012

Oregonians with developmental disabilities face many barriers to quality health care and frequently lack access to basic medical coverage and health care providers trained to meet their needs.

One of the challenges to consistent provision of quality health care is the instability of publicly-funded health insurance. Services for Medicaid-eligible individuals under the Oregon Health Plan (OHP) have been reduced and are in danger of further reductions due to budget cuts. Vital services, such as dental care and prescription drug coverage, considered optional under Medicaid, risk total elimination when budgets are tight.

Limitations in benefit packages, and the rise of health care costs, have reduced access to health care for people who have private insurance.

In addition, thousands of adults and children with disabilities have no health insurance and cannot access even basic health care in Oregon.

Council Position

Like all Oregonians, Oregonians with developmental disabilities should have access to appropriate, comprehensive care necessary to achieve optimal health, wellness and development so they may lead a full and productive life. Health systems should recognize that to achieve these goals, some individuals with developmental disabilities may require more specialized services.

Oregonians with developmental disabilities face many barriers to quality health care and frequently lack access to basic medical coverage and health care providers trained to meet their needs.

Disability is a natural part of the human condition and should not diminish a person’s right to access high-quality, inclusive health care to promote health and wellness throughout one’s lifespan.

If Oregon health care systems are to meet the needs of people with developmental disabilities, they must include the following components:

  • Access to Basic, Comprehensive and Specialty Health Services Including:
    • Support and help individuals or families navigate the health system.
    • Benefit packages that meet the needs of people with developmental disabilities, including specialist referrals; and
    • Medical, dental, behavioral health, substance abuse, habilitative and rehabilitative services to treat acute and chronic conditions and prevent secondary conditions.
  • Qualified and Culturally Competent Providers Who:

    • Treat people with developmental disabilities with respect;
    • Utilize person and family centered health care; and
    • Are knowledgeable and trained to understand developmental disabilities and how they may impact an individual’s health care.
  • Consumer Choice Principles Recognizing:

    • All consumers have the right to make informed health care decisions, including the right to choose healthcare providers;
    • Reasonable accommodations, including extended appointments and accessible medical equipment, must be provided for an individual to access services; and
    • People who do not have capacity to make their own health care decisions should have appropriate, surrogate decision makers who are familiar with the person’s desires and needs. When appropriate, a healthcare representative with legal authority to make health care decisions may act in this capacity. Providers should recognize these surrogates.
  • Strong Quality Assurance Measures That Enable Consumer Participation Including:
    • Health systems providing understandable information to consumers about services, consumer rights and responsibilities, grievance and appeals processes;
    • Consumer rights to appeal any benefit or enrollment decision whether a service denial, withholding of experimental treatment or forced treatment;
    • Health systems reporting data about health care access for people with disabilities; and
    • Health systems involving people with developmental disabilities and advocates in health care administration and plan development.

Background

Accessing appropriate medical care is an ongoing challenge for people with developmental disabilities. Medical equipment is often not available for people with mobility limitations or physical disabilities.  Health information is regularly inaccessible for people who have cognitive, vision or hearing disabilities. Negative attitudes and misconceptions, often based on inadequate training of health care providers, further limits access. Systems are not set up to accommodate someone with exceptional health care needs. As a result, people with developmental disabilities often struggle to obtain vital health services.

The high cost of health care and problems with insurance create further barriers. People with developmental disabilities and families with children with developmental disabilities often face discrimination by insurers that impose high premiums and deny or limit coverage for disabling conditions.

Access to necessary services for families and consumers with developmental disabilities can be denied or severely limited by health care organizations because they do not understand the health care needs of individuals with disabilities.

Oregon’s public and private health care systems and funding strategies have been in a state of reform for many years. In an effort to extend health care coverage to as many Oregonians as possible, the state developed unique strategies, such as the Oregon Health Plan and its package of benefits based on a prioritized list of conditions and treatments. Continued changes in the health care system, as well as the state and federal budget shortfalls, have increased the challenges for people with developmental disabilities in accessing appropriate and accessible medical care.

Activities

  • Advocate for full funding of the Oregon Health Plan.
  • Monitor implementation of OHP and any proposed reductions in services.
  • Oppose reductions in Medicaid optional services such as dental care or durable medical equipment for people with developmental disabilities.
  • Track insurance and other legislation that might limit access to health care for people with developmental disabilities.
  • Encourage training of health care professionals on specific health care needs of persons with developmental disabilities.

 

 

Employment

Summary

Revised 2010

 

The vast majority of Oregonians with developmental disabilities are under employed or unemployed despite their demonstrated ability to become valued employees. While the state is once again making employment of individuals with developmental disabilities a high priority, these individuals continue to face significant barriers and challenges in obtaining and maintaining integrated competitive employment.

 

            Position:

The Oregon Council on Developmental Disabilities believes that people with developmental disabilities can and should have the opportunity to work in integrated competitive jobs, earn a livable wage, and enjoy the other benefits that come from having a job. Persons with developmental disabilities are an important and largely untapped employment resource. With the appropriate information, education, training, technology and support, most people can work in their communities. But the quality and quantity of employment options for people with developmental disabilities in Oregon must be improved.

The Council believes that quality employment outcomes for Oregonians with developmental disabilities should include:

·         integrated competitive employment,

·         a choice of jobs and careers,

·         meaningful wages and benefits,

·         opportunities to advance in their jobs and careers,

·         community inclusion and relationships with coworkers.

To improve the employment outcomes of Oregonians with developmental disabilities, the Council believes:

·         the state must remain focused on and committed to advancing integrated, competitive employment;

·         employment outcome data should be collected, analyzed, reported and used to make improvements in state funded services;

·         a wide array of options and supports must be available to meet the employment needs of individuals;

·         public school systems must fulfill their responsibility under the Individuals with Disabilities Education Act to develop a coordinated set of activities that facilitate the student’s movement from school to post-school activities including the preparation of students for transition to integrated, competitive employment;

·         individuals with developmental disabilities and families need exposure to employment success stories and other assistance to understand that integrated competitive employment is an achievable goal and an expectation for working age adults;

·         training and technical assistance must be provided to people who work with individuals to reach their employment goals;

·         interagency partnerships, and partnerships between government and the business community, must be strengthened.

Background:

Integrated competitive employment offers people, with and without disabilities, greater access to their communities, a path out of poverty, reduced dependence on publicly funded services, self esteem and a valued social role. Workers with developmental disabilities report satisfaction about having their own money to spend, doing important jobs, being independent, and making new friends.

Oregon was a national leader in supported employment in the late 1980’s. With public policy that promoted integrated jobs and a major federal grant, approximately 50% of persons with developmental disabilities moved from segregated to integrated employment. Since then, however, the trend has reversed. Gains in supported employment were lost due to a lack of focus on integrated employment outcomes. State employment outcome data[1] now show that only 6% of individuals in comprehensive services who receive employment supports have integrated community jobs. The remaining 94% are either in segregated employment or choose not to work:

·         42% are in sheltered employment,

·         13% are in group employment,

·         39% are in “alternatives to employment.”

In 2005, Oregon’s disability community refocused on competitive employment of persons with disabilities. Advocates formed a coalition to promote employment and urged adoption of policy promoting employment of persons with developmental disabilities. With a multi-year Medicaid Infrastructure Grant, The Office of Vocational Rehabilitation Services (OVRS) launched the federally-funded Competitive Employment Project (CEP) to address systemic barriers to employment of persons with disabilities. At about the same time, Office of Developmental Disabilities Services joined a national technical assistance employment network, and launched a rate change initiative that may positively effect employment of persons with developmental disabilities.

In 2009, Seniors and People with Disabilities adopted the Employment First policy for persons with developmental disabilities. In addition, SPD’s Employed Persons with Disabilities program has more than doubled the number of employed persons with disabilities to whom it is providing Medicaid health care benefits. OVRS/CEP, in partnership with Disability Rights Oregon (DRO) and Oregon’s Centers for Independent Living, developed the Work Incentives Network (WIN). WIN and DRO’s Work Incentives and Planning Assistance program, provide work incentives and benefits planning to individuals with disabilities seeking to be competitive employed. In addition, OVRS/CEP and similar projects in other states are jointly carrying out a nationwide campaign to educate and engage employers about hiring people with disabilities.

These efforts and the renewed focus on employment are welcome. The path to competitive integrated employment, however, remains difficult for many individuals, sometimes even more so for those living in rural parts of the state. For example:

·         Finding jobs that match individuals’ skills and interests is challenging. More organizations and individuals with capacity, skills and creativity are needed to help people reach employment goals.

·         The availability of other interrelated services and supports – including health care benefits, community housing, transportation, and benefits and work incentives planning – remain limited.

·         The rules and policies of federal and state disability programs and policies are complex and can be confusing and conflicting, and may discourage employment.

·         Some educators, service professionals, families and individuals with disabilities may not believe that persons with developmental disabilities can engage in competitive employment and so do not explore employment options.

It is essential that the advocacy community continue to monitor the state’s progress in improving employment services and supports. Periodic evaluations and recommendations should be made and widely distributed. With the additional, though limited, resources now available through the Support Services Medicaid waiver, a high priority should be placed on providing quality employment options for the thousands of persons with developmental disabilities who have access to person centered planning and supports.

Possible Future Activities:

·         Promote the principles and implementation of the state “Employment First” policy so that “employment opportunities in fully integrated work settings shall be the first and priority option explored in the service planning for working age adults with developmental disabilities.” [2]

·         Advocate for ongoing funding of the Work Incentive Network so that persons with disabilities are informed about how to use work incentives to obtain and continue to work, and not jeopardize essential benefits.

·         Advocate for preservation and expansion of the Employed Persons with Disabilities program so that individuals with developmental and other disabilities do not have to choose between being employed and having health care benefits.

·         Participate in broad disability coalitions at the national and state level to strengthen developmental disability representation in employment issues.

·         Work to increase general public awareness and family knowledge of strategies for quality employment of individuals with developmental disabilities.

·         Participate with the developmental disabilities community in advocating for employment through strategic planning and targeted activities with the Developmental Disability Employment Task Force; the State Employment Leadership Network; the Alliance for Full Participation; Seniors and Persons with Disabilities Division and the Restructuring Budgets, Assessments and Rates Program (ReBAR); the Office of Vocational Rehabilitation Services and its Competitive Employment Project; and the State Rehabilitation Council.

·         Support legislation identified by the Developmental Disabilities Coalition as important to the employment of persons with developmental and other disabilities.

·         Support the interagency efforts of the Oregon Department of Education, the Department of Human Services and the Office of Vocation Rehabilitation Services to initiate post secondary transition discussions earlier in the academic process; to improve high school transition services; and strengthen agency collaborations to achieve better post secondary student outcomes, including career related training and employment.

·         Advocate with the Seniors and People with Disabilities Division for improved employment outcomes through employment focused person-centered planning for working age adults, rate restructuring and benefits and work incentives counseling.

·         Support training and technical assistance to families, individuals with developmental disabilities, and professionals that will increase the vision, creativity, capacity, and options for real employment. In particular, advocate for a systematic approach to job coach/job developer training so more direct support professionals have the skills to help people find and keep integrated jobs in the community.

·         Promote stronger linkages between Office of Vocational Rehabilitation Services, public schools and developmental disabilities services at the local and state levels. 

·         Work with other organizations on grants and initiatives that promote employment for individuals with developmental disabilities.

[1] Semi-Annual Employment Outcome System Evaluation Report – Sept. 2009 | www.oregon.gov/DHS/SPD/data/eos2009report14n2.pdf

[2] Office of Developmental Disability Services State Policy on Employment for Working Age Individuals, September 18, 2008

 

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