ABOUT US

Our Mission

The Council engages in advocacy, system’s change and capacity building activities for people with developmental disabilities and their families in order to promote equal opportunity, self-determination, and community inclusion. 

Message from the Executive Director

The Nevada Governor’s Council on Developmental Disabilities is more than your everyday Council or board. We advocate on behalf of and in support of initiatives that increase the self-advocacy, systemic change, and capacity building for people with intellectual and/or developmental disabilities and their families. This is more than a job for most of us. This is our community. This is the world we live and breathe every single day. In order to ensure that people with disabilities have their rights protected, we must fight every single day. If you or your family need help with something disability related, please contact us, so that we can connect you with the resources that can best serve you. If you will be testifying at the legislature, please contact us, so that we can hopefully support your efforts.

I am a person with a disability. However, I am more than just my title or disability, I am a friend and an advocate that will never leave you standing alone. Should you or your family need information or resources, please do not hesitate to contact our office.

Lastly, all of our meetings are open to the public. We highly encourage you to attend and participate in our advocacy activities and planning.

Catherine Nielsen, Executive Director

How We Operate

We are authorized in accordance with Public Law 106-402 of the Developmental Disabilities Assistance and Bill of Rights Act (DD Act) and established under NRS 232.320 within the State of Nevada.  The NGCDD is funded annually by the Federal Department of Health and Human Services with matching funds of 25% appropriated by the Nevada Legislature. 

The Council has designated the Nevada Department of Health and Human Services as our Designated State Agency with the purpose of providing support to the Council under the regulations of the DD Act Section 125(d). 

The Council operates in partnership with the Nevada Disability Advocacy and Law Center (NDALC) and the Nevada Center for Excellence in Disabilities (NCED) under the “Developmental Disabilities Network”. 

Principles of the DD Act

The DD Act has come to represent a fundamentally different vision of what it means to live with a developmental disability. It is a vision rooted in the belief that:

“Disability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilities to live independently, to exert control and choice over their own lives, and to fully participate in and contribute to their communities through full integration and inclusion in the economic, political, social, cultural, and educational mainstream of United States society.

That people with even the most significant disabilities are capable of: “Independence, Self Determination, Productivity, Integration and Inclusion in all areas of community life.”

– DD Act

Core Beliefs

Collage of advocates speaking with the words Speak Your Mind, Even If Your Voice Shakes

The Council believes in, advocates for and uses the best practices of:

  1. Community Inclusion = the opportunity to live and exist as a contributing member of society  while being valued for your abilities and uniqueness.
  2. Cultural Competency = ensuring people of all cultures and backgrounds are respected and included in all aspects of Council work.
  3. Empowerment Through Self Advocacy =  empowering individuals through activities that teach self-advocacy skills and support self-determination. 
  4. Experienced Based Informed Choice = respecting the rights of individuals with disabilities to fully experience ALL options and then making their own decisions about the choices best for them based on those experiences.
  5. Dignity of Risk = the right to take risks when engaging in life experiences, and the right to fail in those activities.
  6. Nothing About Us Without Us = no discussion or decision that effects people with disabilities should happen without their input.
  7. Person First Language =  puts the person before the disability. It describes what a person has, not who a person is. Visit the Disability is Natural website for more information on person first language. Note: some members of the disability community prefer identity first language in place of person first language which views disability as being a core component of identity, much like race and gender. It’s always best to ask first!

“To deny the right to make choices in an effort to protect the person with disabilities from risk is to diminish their human dignity.”

Robert Perske, advocate for people with intellectual disabilities

Planning and Activities

To serve their communities, Councils design five year state plans, reviewed annually by the Council, that address new ways of improving service delivery. To implement the state plans, Councils work with different groups in many ways to advance: (Read More)

Advocacy: the support of policies and practices that increase self‐determination and inclusion in all aspects of community living for individuals with developmental disabilities, and their families.

Capacity Building: activities that expand and/or improve the ability of individuals with developmental disabilities, families, supports, services and/or systems to promote, support and enhance self‐determination, independence, productivity and inclusion in community life.

Systemic Change: a large, long term change that promotes positive or meaningful outcomes for individuals with developmental disabilities and their families.

Other activities include educating communities to welcome people with developmental disabilities, funding projects to show new ways that people with disabilities can work, play, and learn, conducting outreach, providing training and technical assistance, removing barriers, developing coalitions, encouraging citizen participation, and keeping policymakers informed about disability issues.

The goals of our State Plan are based on gaps in service identified through information from the public as well as state and national sources based on Federal “Areas of Emphasis” as outlined in the DD Act. The DD Act allows the State Councils to determine the areas of emphasis upon which to focus. 

We accomplish our goals through activities carried out by NGCDD staff and partnering with other established agencies and organizations to address areas of mutual concern through sub-grants to develop and implement projects that address innovative ways to fill service gaps and develop infrastructure for the State.

Our Council works on a Federal Fiscal year making our reporting period October 1st through September 30th.

An Annual Program Performance Report is submitted to our Federal funding source, the Office on Intellectual and Developmental Disabilities (OIDD), indicating Council activities and progress made toward each identified Goal in our five-year plan.

We also submit a yearly State Impact report to the Governor.

2022-2026 State Plan

Goals established by the Council to be addressed during the current Plan effective October 1, 2021 through September 30, 2026:

GOAL 1: Individuals with I/DD and/or family members of individuals with I/DD will be able to make more informed decisions about their lives by improving access to information on services, supports and rights.

GOAL 2:  Individuals with I/DD will have the information, education and training necessary to participate in local and state advocacy and policy making activities.

GOAL 3:  Develop and strengthen systems that improve quality services and access to quality services and supports for individuals with I/DD and their families.

2022 – 2026 State Plan Documents

Position Statements

Ableism

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Ableism is the discrimination of and social prejudice against people with disabilities based on the belief that “typical” abilities are superior. At the center of the idea, ableism is the belief and assumption that “people with disabilities need fixing” and that there is a “solution to their problems”. Much like racism and sexism, ableism includes harmful stereotypes, misconceptions, misinformation, and generalization of people with disabilities and their abilities.

People with disabilities have been subject to the greatest violence and oppression of ableism. In order to eliminate ableism, a world must be built where all bodies and minds are respected, valued, and equal. Many movements for rights and justice do not include people with disabilities. Even the disability rights movement has been based on a competitive access model, in which people constantly prove their need for support.

The Nevada Governor’s Council on Developmental Disabilities (NGCDD) believes that people who have disabilities must be respected and valued for everything that makes them who they are. It is important to honor and embrace disability as part of a person’s identity that gives them power.

Policy Recommendations:

  • Remove any language that portrays individuals with disabilities as being less than, broken, unworthy, or is negative, harmful, oppressive, or discriminatory in nature.
  • Systems shall be focused on ending beliefs and systems that favor people who do not have disabilities, discrimination and unfair treatment because of someone’s identity, and unjust treatment that gives some more control over their lives’ than others.
  • Leaders and educators shall include people with disabilities.
  • Efforts towards systems and social change shall ensure collective access to services and supports.
  • Ensure a commitment to cross-movement solidarity that includes working together with other social change groups to make change and create a community that supports one another.
  • Create welcoming environments where all people and their specific needs, abilities, and accommodations are met.
  • Incorporate the Independent Living Model of “Nothing About Us Without Us” in all efforts.

Accessibility

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Accessibility involves much more than providing ramps, it is the key element of inclusion and the baseline of equal service. Accessibility refers to the design of environments, products, and services that facilitate access for people with Intellectual and Developmental Disabilities (I/DD) to the same level of independence and privacy as anyone else. Ensuring effective access to information and services isn’t only about meeting legal requirements or satisfying a policy checklist – it is about constantly striving to expand meaningful participation for all. 

Providing equal access to all individuals with disabilities is the key element of the Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1992 (ADA). The ADA provides a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities, requiring State and local governments communicate as effectively with people who have I/DD as someone without.

The Nevada Governor’s Council on Developmental Disabilities (NGCDD) supports and promotes the right of individuals with I/DD to meaningful participation and equal access to information, products and services through universal, accessible design.

Policy Recommendations:

  • Promote the inclusion of accessible technologies, and the need for universal, accessible design through education and practices that dispel the myths and misguided understanding of what accessibility is and is not.
  • Promote equal access to services and environments by encouraging the adoption of universal design principles and implementing accessible, inclusive practices into all aspects of public engagement.
  • Work with the Nevada Legislature and the State of Nevada to mandate training for all State of Nevada employees on the need for accessibility as well as how to create and maintain accessible content.
  • Work with the Nevada Legislature and the State of Nevada to mandate the development of inclusive public meeting protocols across all state entities and require training for state employees on approaches.
  • Work with the Nevada Legislature and the State of Nevada to mandate a review of procedures and policies to ensure they are consistent with inclusive and accessible goals.

Charter Schools

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Students with disabilities have a right to the education setting that is most appropriate and beneficial for their educational needs. For many families and educators, charter schools offer more options for student education and supports.

Charter schools typically do not receive funding from their school districts to purchase, lease, or improve facilities. Securing financing for the facility can be problematic for a charter school because some schools lack tangible assets and an operating history that lenders use when evaluating a mortgage loan application.

State laws often grant charter schools some freedom from meeting certain state or local education regulations or policies. However, in Nevada, charter schools must follow all federal laws that apply to any other public school.

The responsibility to make a free appropriate public education (FAPE) available to all students with disabilities applies to ALL public schools under the Individuals with Disabilities Education Act (IDEA). Charter schools are public schools; therefore, they bear the same responsibility.

All Nevada Charter Schools are required, under applicable law, including the Individuals with Disabilities Education Act (“IDEA”), Section 504 of the Federal Rehabilitation Act (“Section 504”) the Americans with Disabilities Act (the “ADA”), applicable Nevada law and regulations, and various Authority policies, to provide special education services to its students as required by those respective authorities.

The Nevada Governor’ Council on Developmental Disabilities (NGCDD) believes that individuals with developmental disabilities should have equal access to services provided in Charter School as are provided in all public-school settings. In addition to improving access to quality education through charter schools for persons with I/DD, the education system and any person responsible for the delivery of educational services to children in Charter Schools, the chartering agency and authorizer, and ultimately the highest governmental authority must ensure the rights of all students with disabilities are upheld.

Policy Recommendations:

  • Ensure policy requires that all Nevada Charter Schools will adhere to the provisions of the IDEA and applicable Nevada special education laws and regulations to assure that all students with disabilities are accorded a free, appropriate public education (“FAPE”) including special education and related services. The Charter School will also ensure that no student otherwise eligible to enroll in their Charter School will be denied enrollment on the basis of their special education or disability status.
  • Remove barriers that create disincentives for people with developmental disabilities to attend schools within a reasonable distance from their home. These barriers may include transportation, flexible options for supports, and availability of funding.
  • Charter Schools must not discriminate against students with disabilities in their admissions policies. Specialized learning needs cannot be used as a criterion for excluding children from attendance.
  • Engage the private sector to raise awareness about Charter School and support for legislation that secures funding for special education services.
  • Adopt policies that ensure the movement of students with disabilities, including students with moderate to severe disabilities, into less restrictive environments as appropriate and increase interactions of students with disabilities with non-disabled students.
  • Increase, maintain, or reallocate funding for Charters Schools to provide specialized special education services that includes therapy services.
  • Ensure that all school facilities are physically accessible and follow ADA regulations.

Community Support

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Over 5.4 million children and adults have developmental disabilities, and most of them live at home with families. However, they often receive too few, if any, services and face long waiting lists for needed supports. 

The Nevada Governor’s Council on Developmental Disabilities (NGCDD) believes that people with developmental disabilities should receive community supports to allow them to live in the setting of their choice to enable them to participate fully in community life. Children with developmental disabilities should remain with their family or an alternative family model and receive the necessary supports to enhance community living.

Policy Recommendations:

  • Change state services and programs to reflect the preference for community based services versus institutional living.
  • Address inequities in access to and funding for direct support caregiver services for all disability populations; including increasing wages for direct support professionals to create a more stable and qualified workforce.
  • Ensure the availability of respite care for families with members of all ages and disabilities.
  • Promote the use of special needs trusts to financially assist families with disability related expenses to empower people with developmental disabilities to become more self sufficient and promote the use of asset development.
  • Remove waiting lists for community living options by increasing financial and other supportive resources.
  • Ensure the rapid movement of individuals with developmental disabilities from institutions to community options with necessary supports and the transfer of the individuals’ funds to the community programs.

Employment

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Working age people with developmental and other disabilities are among the most unemployed and underemployed segments of our society.  Too often, unemployment is often accepted as an inevitable result of living with a significant developmental disability.  Employment is the avenue to independence and increased socialization for individuals with developmental disabilities. 

The Nevada Governor’ Council on Developmental Disabilities (NGCDD) believes that individuals with developmental disabilities who can and want to work should have access to the resources and supports necessary to gain and maintain meaningful community-based employment.

Policy Recommendations: 

  • Remove barriers that create disincentives for people with developmental disabilities to find and maintain competitive employment (employment includes supported employment, job training and job coaching) with competitive wages in the community. These barriers may include: transportation, flexible options for on the job supports, and continued or potential health care benefits.
  • Implement “Employment First” policies that transform the expectations of state agencies, service providers and people with developmental disabilities. Under “Employment First’, the expectation is that a person with a developmental or other disability can and wants to work, and a successful outcome is finding these individuals meaningful and gainful employment that meets their needs and interests by tailoring services to help them succeed in the workforce.
  • Fully fund the state vocational rehabilitation (VR) program that are significantly under funded to meet the employment needs of individuals with severe disabilities who need VR services to obtain employment.
  • Engage the private sector to raise awareness about and support for inclusion of people with developmental disabilities in the workforce and provide training, incentives and other supports to the business community to increase hiring of people with developmental disabilities.
  • Increase, maintain, or reallocate funding for transition to work programs that successfully assist young people with developmental disabilities as they age out of education settings and prepare to seek, gain and maintain meaningful employment. Increase accountability at the local level to assure that students have jobs when they graduate.
  • Strengthen funding for self-employment initiatives that enable people with developmental disabilities to start their own businesses and/or be self-employed.
  • Adopt proactive polices by federal, state and local government agencies to recruit, hire, train and mentor people with developmental disabilities.
  • Provide incentives to employers to support integrated, community employment at minimum wage or above.

Health Care

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Individuals with intellectual and developmental disabilities (I/DD) are more likely to experience early death, chronic conditions, and preventable health, dental and vision problems, compared to persons without disabilities. Even with limited access to affordable care, people with I/DD often have difficulty recognizing and communicating their own health care needs. Moreover, there is a significant shortage of qualified, trained health care professionals who are prepared and willing to treat them.

The Nevada Governor’s Council on Developmental Disabilities (NGCDD) believes that comprehensive health care must provide affordable health, dental and vision care coverage, improved quality, and better cost control, while addressing the significant health and health care disparities faced by individuals with developmental disabilities. In addition to improving access to quality medical care for persons with I/DD, the health care system must improve the way our State provides long term services and supports related to all systems of health care such as referrals to affordable and qualified medical professionals, education on preventative health measures, assistance, and supervision with activities of daily living, taking medication, and preparing meals.

Policy Recommendations: 

Comprehensive health care must adequately address the following:

  • Access to affordable health, dental, and vision care coverage for Nevadans with developmental disabilities, removing any bias based on pre-existing conditions, congenital impairments, or whether the intervention is habilitative or rehabilitative in nature. People with I/DD must not experience disability-related discrimination in decisions to provide, delay, deny, or limit health care interventions or treatments.
  • People with I/DD must not experience disability-related discrimination when making end of life decisions.
  • Ensure medications are appropriate to the needs of the patient and do not cause undue harm.
  • Assure greater access to quality care by health care providers trained to meet the medical needs of individuals with developmental disabilities.
  • Provide appropriate, accessible health, dental, and vision care for individuals with developmental disabilities.
  • Ensure all policies and programs result in the creation of equal treatment in health-related services to all individuals.
  • Beginning in youth, encourage inclusion of individuals with I/DD in education, prevention, and wellness programs for over-all health, dental, and vision care.
  • Develop and strengthen the “medical home” model to meet the health, dental, and vision care needs of individuals with I/DD.
  • Support the development and continuation of programs that provide education to eye care professionals and dental professionals on the needs of individuals with I/DD.
  • Support the understanding that wellness, prevention, health promotion, and a robust public health infrastructure are essential components of health care.
  • Ensure data and assessments of health outcomes are collected and must include disability status. Public health initiatives must support the goal of reducing health care disparities for people with disabilities and improving health and function.
  • Ensure sufficient information is available to understand the risks, demands, potential for significant pain, and benefits of any procedure for which consent is sought provided in ways that accommodate reading, language, learning, and other limitations that are common among persons with I/DD.
  • Ensure medical facilities are ADA accessible and have accessible exam and diagnostic equipment that address complex health care needs.
  • Ensure medical facilities and providers respect and follow supported decision making (SDM) and SDM agreements. This includes understanding and supporting that many individuals with disabilities are their own guardian and do not have a guardianship.
  • Encourage coordinated healthcare between providers and facilities, with intentional focus on patients who may be un/under insured and who may be a part of the aging population.
  • Adopt policies that increase access to tele-health services.
  • Encourage healthcare providers and facilities to work with Medicaid to ensure access to patients who may lack regular access to care.
  • Encourage adoption of policies that promote a spectrum of services to fully recognize that healthcare is unique to the individual.
  • Ensure adequate reimbursement rates to attract quality healthcare professionals.
  • Encourage adoption of policies that promote discussions on reproductive healthcare to include all options and supports available.
  • Encourage adoption of policies that promote mental healthcare to be included in the discussions of healthcare at all levels.

Housing

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Across the nation, people with developmental disabilities face a severe crisis in the availability of decent, safe, affordable and accessible housing. Nevada continues to promote inclusion for people with developmental disabilities to live in their communities and guard against return to congregate facilities or other institutions. 

The Nevada Governor’s Council on Developmental Disabilities (NGCDD) believes that citizens with developmental disabilities should live in inclusive, safe and affordable communities of their choice and be provided with the needed individualized supports and accommodations.

Policy Recommendations:

  • Increase the supply of affordable and accessible housing options that are integrated in the community, including temporary housing, rental housing and/or home ownership, to meet the growing unmet needs of people with disabilities and their families.
  • Significantly increase funding for and protect the integrity of HUD programs, U.S. Department of Agriculture housing programs, as well as all other federal/state housing programs providing funding for people with disabilities.
  • Provide funding to address the need for safe, affordable and accessible emergency housing for individuals with disabilities.
  • Remove barriers that prevent people from temporary housing, rental housing, or buying their own homes.
  • Require that projects developed with public funds and apply design standards identical to those in Section 504 of the Rehabilitation Act.
  • Eliminate discrimination based on disabilities in all sales, rental, and other non-assisted living accommodations.

Human and Civil Rights

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All individuals regardless of their abilities are entitled to human rights as well as the protection and benefits of civil rights laws of their country. Individuals with intellectual and/or developmental disabilities are humans and thus are afforded all of the same rights and protections as everyone else. Disability rights are human rights. Everyone deserves to be included and live a full life in their community — accessing the same public spaces, housing opportunities, education, and work as anyone else.

People with disabilities can be found in people of any age, gender identity, race and ethnicity, sexual orientation and sexuality, faith or religion, culture, language, economic status, immigration and legal residency status, familial status, support need, and among people who have other disabilities. Freedom from discrimination is a basic human right and yet many individuals with I/DD have been unjustifiably denied or limited in their lifetime. People with I/DD have the right to share in the benefits and riches of society and the world as well as the right to make their own contributions to their communities and society. They have often been denied these rights and opportunities.

The Nevada Governor’s Council on Developmental Disabilities (NGCDD) believes that all are entitled to human and civil rights regardless of age; gender; race/ethnicity; sexual orientation; cultural, linguistic, geographic, and spiritual diversity; economic status; severity of disability; intensity of needed supports; and other factors that expose them to increased risk of rights violations.

Policy Recommendations:

  1. Make all policy and services aligned with disability rights.
  2. Ensure the inclusion and full participation of persons with disabilities in all facets of community living.
  3. Increase knowledge of disability rights among all State and public program personnel and ensure the inclusion of People with disabilities into all aspects of their work.
  4. Ensure the right to medical, psychological and functional treatment, including prosthetic and orthotic appliances, to medical and social rehabilitation, education, vocational training and rehabilitation, aid, counselling, placement services and other services which will enable them to develop their capabilities and skills to the maximum and will hasten the processes of their social integration or reintegration.
  5. People with disabilities shall be protected against all exploitation, all regulations and all treatment of a discriminatory, abusive or degrading nature.
  6. People with disabilities have the right to access care without the fear of denial of treatment.
  7. People with disabilities have the right to utilize Supported Decision Making.
  8. People with disabilities have the right to respect and dignity.
  9. Support the concept of the dignity of risk which is the right of a person to make an informed choice to engage in experiences meaningful to the individual and which are necessary for personal growth and development.

Informed Choice

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Informed choice occurs when a person, with or without reasonable accommodations, understands all the options available to them, including the benefits and risks of their decisions. The process of informed choice doesn’t have an end and doesn’t just occur onetime. Informed choice is part of an ongoing process of engaging people in person-centered conversations about their goals. An informed choice allows an individual with disabilities to be in control of their life’s decisions and ensure they’re making meaningful choices about what will impact their future.

The Nevada Governor’s Council on Developmental Disabilities (NGCDD) believes that all people with intellectual and developmental disabilities should be provided with all options that impact their life and should be provided the opportunity to experience their options before making a decision.

Policy Recommendations:

  • Information shall be given to the individual making an informed decision in the manner most appropriate to their communication needs and that is understandable to the individual.
  • Individuals, families, caregivers, and guardians shall be engaged regularly in conversations about their goals and aspirations to include employment, housing, transportation, health, to include supported decision-making discussions.
  • Encouraging individuals with intellectual and developmental disabilities to enact supported decision making in all aspects of their life.
  • Information on all available options shall be provided in a way that is easily understood and will include benefits, risks, and steps to move forward, if desired.
  • Informed choice process shall include an opportunity to visit and observe all options available, to include people with lived experience and to talk with them about their experiences.
  • Ensure that choices are respected, and individuals will not be forced to do something that they don’t want to do.
  • NGCDD also believes that agencies should ensure informed choice through written policies and procedures, standardized assessment and career planning tools, provider competencies, training and technical assistance, and ongoing monitoring.

Language Access

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Currently in the World there are over 7,100 languages. It is critical for life that all members of the community can receive information and services in their native language. For many Individuals with Intellectual and/or Developmental Disabilities this includes languages beyond English and includes American Sign Language, Braille, Large Print, and Audio.

Currently nearly one billion people or 15 percent of the world’s population have some form of disability, and 1 in 4 adults live with a disability that impacts their cognition, hearing, and/or vision. Language access allows for equal access to documents, products, services, and supports that meet the needs of all people, specifically those with disabilities.

The Americans with Disabilities Act of 1990 (ADA) prohibits discrimination against people with disabilities in several areas, including employment, transportation, public accommodations, communications, and access to state and local government programs and services. The ADA requires that state and local governments, as well as businesses and nonprofit organizations, communicate as effectively with people who have communication disabilities as those without.

Section 508 of the Rehabilitation Act of 1973 requires all federal agencies to maintain communications in an accessible format, including electronic information, web pages, and other digital content, including those accessed through mobile devices or smartphones. Additionally, all communications formats include Word, pdf, audio, video, and PowerPoint files.

The Nevada Governor’s Council on Developmental Disabilities (NGCDD) believes that language access is vital to ensuring people with disabilities receiving timely, clear, and direct access to information that impacts their lives and the lives of their family members. By creating language access this reduces confusion, misunderstanding, delays in services, and creates empowerment, clarity, and higher quality care.

Policy Recommendations:

  • Create a language access plan that defines how to provide meaningful access to services to individuals whose primary language is anything other than English or who have limited English proficiency.  
  • Make reasonable efforts to eliminate or reduce barriers to accessing information for those whose primary language is anything other than English or who have limited English proficiency. 
  • Communicate all information as effectively to individuals with whose primary language is anything other than English or who have limited English proficiency, to the same level of access received by those whose primary language is not anything other than English or for those who do not have limited English proficiency. 
  • Provide interpretation or language translation of information into the primary language of the target audience that retains the same meaning, intent, and quality of the original messaging.
  • Ensure language used is plain language and can be easily understood by all audiences.

Mental Health Care

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Individuals with Intellectual and/or Developmental Disabilities are at an increased risk of co-occurring disabilities with mental health conditions. These mental health conditions include but are not limited to major depressive disorder, bipolar disorder, anxiety disorders, psychotic illnesses, among others. People with I/DD and mental health conditions often experience symptoms that lead to services being provided within the mental health service system framework. Most mental health professionals do not receive sufficient training on the needs of the diverse population.

The Nevada Governor’s Council on Developmental Disabilities (NGCDD) recognizes the challenges that policymakers and administrators face in addressing the current needs of Mental Healthcare in Nevada. Currently available treatment options in Nevada are not sufficient to serve the current needs of this community. Increased access to mental health services is necessary to meet the needs of those with intellectual and/or developmental disabilities and mental health conditions. 

Policy Recommendations:

  • Support initiatives that fund programs to provide the levels of assistance, therapy, primary care, long-term medical oversight and individualized supports that people with these co-occurring conditions need to live, work, and lead regular lives in the community.
  • Support initiatives that ensure greater access to quality care.
  • Ensure leadership has active oversight and participation on coordination of care for individuals with co-occurring conditions receiving services.
  • Expansion of supports furnished under the Center for Medicare & Medicaid Services, including Home & Community-Based Medicaid Waiver programs and state funding of improved crisis services and increased access to mental health services.
  • Community Living. The primary goal and outcome of service delivery should be to enable people with co-occurring disabilities to have friends and to live, attend school, and/or work in the community, consistent with Title II of the Americans with Disabilities Act and the Supreme Court’s Olmstead ruling.
  • Design of mental health facilities must include universal design and language access, that encompasses the unique needs of those with physical and developmental disabilities.
  • Knowledge and Expertise. Systems change should involve the recipients of supports and services family members, and advocates in conjunction with key state officials, providers, and subject matter experts with experience providing and funding high-quality services and supports to children and adults with co-occurring disabilities. All of these individuals should be included in the design of new services, supports, and funding options. Consideration should be given to including representatives of diverse cultural and linguistic groups.
  • All planning for services should be person-centered and individualized.
  • Expansion of current programs or addition of new programs must include people with disabilities at the planning table. 
  • Provisions should be made to specify required qualifications and training expectations for staff members (which should include individuals with lived experiences and family members), who treat children and adults with co-occurring disabilities.
  • Support shall be made available for family and friends that provide care to those with co-occurring disorders. Services and supports including respite care, integrated care coordination, preventive behavioral supports, and crisis intervention.
  • Prevention and stabilization must be designed to address the needs of recipients of services across the lifespan and their family members.
  • Training and skills development should be provided to leadership, staff, and providers including those who provide peer support.
  • Support initiatives that study current impact of neurodegenerative, other co-occurring, and mental health conditions on those with intellectual and developmental disabilities.
  • Encourage providers to accept patients who use Medicaid or are un/under insured and to provide preventative, as well as rehabilitative care to these individuals.

Quality Assurance

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Quality assurance is a confirmation of whether or not products or services meet or exceed customer expectations.  Quality Assurance involves advocacy, capacity building, and systemic change activities resulting in improved choice in consumer and family-centered services for individuals with developmental disabilities. Quality Assurance activities include inter-agency coordination and collection of data resulting in improved services, supports, and other assistance.  Such activities promote self-determination, independence, productivity, and inclusion in all aspects of community life for individuals with developmental disabilities. 

The Nevada Governor’s Council on Developmental Disabilities (NGCDD) believes individuals with developmental disabilities must define their own quality of life/services. All service systems, such as education, employment, health, housing, child care, recreation, transportation, and any other system that impacts persons with developmental disabilities, should actively engage these individuals and their families in quality assurance.  This includes identifying problems and making improvements that enhance the quality of life for people with developmental disabilities.

Policy Recommendations: 

  • Support compliance with all laws, certification requirements, licensing standards, and contractual obligations.
  • Promote and support individuals to find and maintain relationships with people in their communities beyond paid providers and caregivers.
  • Ensure access to home and community-based services and supports that are planned and implemented in keeping with each individual’s unique needs, expressed preferences, and decisions concerning his/her life in the community.
  • Empower individuals by embracing the principles of self-determination and applying person centered practices.
  • Demand statewide Quality Assurance information management systems that assist in collection, tracking, trending, and analysis of meaningful personal outcomes.
  • Ensure access to information and supports necessary to affect public policy at the local, state, and national levels.
  • Ensure access to information about services and supports that individuals & families need to make informed choices.

Sexuality and Sexual Health

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Historically, people with intellectual/developmental disabilities (I/DD) have been thought to be asexual without needing to have loving and fulfilling relationships with others. Their rights to sexuality, which is essential to human health and well-being, have been denied and this has negatively affected people with I/DD in gender identity, friendships, self-esteem, body image and awareness, emotional growth, and social behavior. People with I/DD historically lack access to appropriate sexuality education which may cause them to engage in inappropriate sexual activity because of manipulation, loneliness, or physical force instead of an expression of their sexuality. Lack of accurate information being provided on sexuality and sexual health is a key factor in higher rates of abuse for people with I/DD.

The Nevada Governor’s Council on Developmental Disabilities (NGCDD) believes that every person has the right to exercise choices regarding relationships and sexual expression regardless of the presence of I/DD or severity of their diagnosis and does not justify loss of rights related to sexuality, sexuality education, and sexual health.

The NGCDD supports the position of the World Health Organization on sexual rights of people living with a disability. These include the right to:

• be recognized as having a sexual nature just like anyone else.
• be protected from sexual harassment, exploitation, and physical, sexual, and emotional abuse (regardless of the diagnosis of the individual abused or the person doing the abusing).
• be protected from forced sterilization solely because of their disability.
• explore and express their gender and sexuality.
• have relationships based on consent, respect, and safety.
• choose when, whether or not, to have sexual experiences.
• learn lessons from life’s experience, with support and skill development where required.
• control decisions which affect their sexual and reproductive health and relationships as much as possible.

Policy Recommendations:

  • School districts, medical personnel, first responders, and other trusted members of I/DD community shall promote sharing of accurate information about sexuality, sexual health, sexual choices including orientation, and other various sexual health related topics to people with I/DD, their family members, service providers, and those outside of the I/DD community in order to promote safe and consensual sexual health, and to provide care that is supported and well informed.
  • Implement trainings that provide education on safe behaviors in relationships including sexual and non-sexual relationships. Include these trainings and information for all students K-12.
  • Implement policies that promote providing information on options, rights, and services available to people with I/DD in order to ensure safe and consensual sexual health.
  • Implement policies that are welcoming and inclusive of all sexualities and relationship styles.
  • Implement policies that promote the empowerment of people living with a disability to participate as fully as they are able in pursuit of their own sexual and reproductive health and in achieving a healthy relationship with both their own sexuality and with other people.
  • Discourage use of guardianships or positions of power to control or manipulate relationships.
  • Discourage abuse of power in situations or relationships that may negatively influence another person’s desires, identity, orientation, or other relationships.
  • Discourage unsupportive or negative behaviors in relationships of romantic and non-romantic nature.
  • Implement policies that promote sharing of information about dating and relationships. This information shall include various types of relationships including sexual and non-sexual in nature.
  • Implement policies and procedures that support marriage, child rearing, and adoption for people with disabilities.
  • Implement policies and procedures that encourage safe relationships including those online and long-distance.
  • Implement policies that addressed victims of sexual assault.
  • Discourage unsafe dating practices and encourage meeting potential partners in safe situations.
  • Discourage negative stigmas and beliefs surrounding the fact that people with disabilities are sexual beings with desires and needs.
  • All individuals, regardless of their disability or diagnosis, shall have the right to make their own informed decisions regarding sterilization and birth control. For patients with impaired decision-making capacity or understanding, a representative may be used. This representative’s decisions must be made in the best interests of the patient, not the interests of others, including carers, other family members, or the community.
  • People with I/DD who are also intersex, transgender, and/or gender diverse should have equitable access to quality sexual and reproductive healthcare, and to health services that are inclusive, free of discrimination and stigmas, and responsive to their individual healthcare needs.
  • People with I/DD should have access to accurate medical information on gender affirmation when requested and access to medical providers who can accurately provide medical advice on gender affirmation.
  • Encourage implementation of policies that protect the right to reproductive healthcare regardless of the person’s diagnosis or abilities, including patients who are non-verbal.
  • Encourage thoughtful and thorough discussions about consent and non-consent and to fully receive consent by all individuals receiving care, including those who are non-verbal.
  • Implement training for staff that interact with patients to understand the impact of re-victimization and implement policies that ensure avoiding re-victimization.

Supported Decision Making and Guardianship

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Guardianship is a legal proceeding that can remove civil rights and privileges of an individual by assigning control of his or her life, or aspects of their life to someone else. 

Many options, other than guardianship, are available to provide counsel, guidance and assistance with making decisions. The principles of Informed Choice, Person Centered Planning and Self-Determination dictate that adults with intellectual/developmental disabilities (I/DD) are respected and supported in making their own life decisions. Individuals who can make life decisions with support from others around them should be enabled to do so.

Supported decision-making is recognized as a less restrictive alternative to guardianship; whereby, trusted supporters are afforded the legal status to be with the adult, participate in discussions, help gather and evaluate information, consider and communicate decisions so individuals with I/DD understand the situations and choices they face and can make their own decisions without the need for a guardian.

The Nevada Governor’s Council on Developmental Disabilities (NGCDD) supports the rights of individuals with I/DD to direct their own lives to the maximum of their abilities through changes to the guardianship system in Nevada that promotes the best practices of Person Centered Planning, Informed Choice and Self Determination through Supported Decision Making.

Policy Recommendations:

  • Empower individuals by applying the principles of Self-Determination, Informed Choice and Person-Centered practices in all aspects of their life.
  • Educational and training material about alternatives to guardianship should be provided to people with I/DD, trusted supporters, educational, medical, financial, legal, and other professionals in order to ensure consistency and opportunity across the state.
  • Support legislation that promotes Supported Decision-Making options to be considered as alternatives to guardianship.

Transportation

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Within our society, freedom of movement is a fundamental right. However, it remains a largely unfulfilled promise for citizens with disabilities. Millions of Americans with developmental disabilities have difficulties obtaining transportation that serves as a vital lifeline to employment, education, health care and community life. 

The Nevada Governor’s Council on Developmental Disabilities (NGCDD) believes that all publicly funded and/or regulated transportation service systems must be: seamlessly coordinated among all modes of transportation; expanded in suburban, urban, rural and unincorporated areas to connect places people live with places they work, shop, socialize, worship, attend school, access health care, etc.; incorporated with mobility management and training services for individuals with developmental disabilities; designed to appropriately address insurance and liability of vehicles and operators who serve in a coordinated transportation environment, including non-profit providers); based on principles of universal design; supported by stable and adequate funding; and fully accessible to all people with developmental disabilities.

Policy Recommendations: 

  • Increase funding for mass transit programs (including para-transit).
  • Encourage pooled use of vehicles purchased so that underutilized vehicles may be shared.
  • Simplify the coordinated planning process for the programs that serve people with developmental disabilities and create transparency and accountability.
  • Promote incentives that encourage greater mobility for people with developmental disabilities.
  • Advocate that transportation providers to have up to 15% of their fleet include accessible vans/taxi cabs – and require training for drivers on how to assist passengers with developmental disabilities.
  • Support coordinated human services and public transportation planning process and its structure.
  • Encourage use of uniform data collection to evaluate customer satisfaction and to support coordination of transportation efforts.

Voting

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Voting is a fundamental civil right for Americans to have a voice in choosing the elected officials whose decisions impact our lives, families, and communities. Individuals with intellectual and developmental disabilities (I/DD) are more likely to experience difficulties in registering to vote, requesting absentee ballots, and casting their vote, compared to persons without disabilities. Even with limited access to ADA compliant machines, many poll workers are unfamiliar with and unable to provide instruction to someone with a disability on how to properly use the machine. When assistance is provided, it is often without the privacy of the individual’s vote in mind.

Several federal laws recognize and protect the right of people with disabilities to vote. They set standards to ensure access to polling places and to permit assistance to voters where it is needed. The Help America Vote Act of 2002 (HAVA) requires jurisdictions responsible for conducting federal elections to provide at least one accessible voting system for persons with disabilities at each polling place in federal elections.  The accessible voting system must provide the same opportunity for access and participation, including privacy and independence, that other voters receive. Universal accessibility creates a world that does not separate anyone based on their abilities. The fundamental problem is that voters with disabilities are being offered a “separate but equal” approach to voting, and as such “separate” is not equal.

The Nevada Governor’s Council on Developmental Disabilities (NGCDD) advocates for accessible, effective, and efficient election processes at all levels, that have a universal design for all voters.

Policy Recommendations:

Voting for people with disabilities must adequately include the following:

  • Access to working ADA compliant machines at all polling locations, with polling workers trained and available to assist, if requested.
  • Access to a private and equal location to cast their ballots.
  • Ensure all policies and programs result in the creation of equal treatment and access to all universally designed voting related services to all individuals.
  • Access to reasonable voting hours and expanded transportation hours to accommodate public transportation users and/or voters who work.
  • Develop and strengthen inclusive laws that protect the right to vote, easy access to voting machines, easy voter registration and absentee ballot requests, reasonable hours to vote which reflect the needs of working voters, and elimination of government ID barriers to voting.
  • Beginning in youth, encourage inclusion of individuals with I/DD in all levels of voting and education on voting rights in schools.
  • Develop and strengthen the currently available polling locations and machines.
  • Support the development and continuation of voting options that provide people with I/DD with multiple options to register to vote, request absentee ballots, and to cast their ballots.
  • Provide education to law and policy makers on the needs of individuals with I/DD when it comes to all aspects of voting.

Diverse Council Membership

Council members are appointed by a state’s governor; by law, more than 60% of a Council’s membership must consist of individuals with developmental disabilities or their family members. Advocates and state agency representatives also serve as members. Council’s must also represent the ethnic and cultural diversity of the state. This enables Councils to  ensure the voices of people with developmental disabilities and their families are the majority vote when it comes to decisions that affect their lives.

Council Members

To get more information on who are current Council Members are, please visit our Meet the Council page.

  1. Christine Riggi – Council Chair, Family Member/Parent
  2. Max Lowe – Council Vice-Chair, Self-Advocate
  3. Taylor Gardner – Private Non-Profit Representative concerned with services for people with I/DD
  4. Brynlin Thornley – Self-Advocate
  5. Stacy Alaribe – Self-Advocate
  6. Gabe Tejada – Self-Advocate
  7. Stacy Carlston – Parent
  8. Arthur Reitz – Parent
  9. Ashley Price – IDEA (Department of Education)
  10. Lisa Bonie – Non Governmental Agency (Northern Nevada Center for Independent Living)
  11. Vivian Turner – Rehab Act of 1973 (Bureau of Vocational Rehabilitation)
  12. Ellen Frias-Wilcox – Title XIX of the SSA (Medicaid)
  13. Randall Owen – University Centers for Excellence in Disabilities (Nevada Center for Excellence in Disabilities)
  14. Jennifer Frischmann – Older Americans Act (Department of Health and Human Services, Aging and Disability Services)
  15. Vacancy – Protection and Advocacy Center (pending appointment)
  16. Vickie Ives – Title V of the SSA (Maternal, Child and Adolescent Health)
  17. Diana Davis – Self-Advocate and Family Member/Parent
  18. Melissa Bart-Plange – Family Member/Parent
  19. Julie Weismann-Steinbaugh – Self-Advocate
  20. Anna Marie Binder – Family Member/Parent
  21. Kathleen Kingston – Family Member/Parent
  22. Vacancy – Self-Advocate
  23. Vacancy – Family Member/Parent

If you’re interested in joining the Council visit our Current and Potential Council Members Page.

Copies of our Position Statements, By-Laws, Governance Policies, Five Year State Plans, State Impact or Federal Reports can be obtained by contacting our Executive Assistant, Rebecca Ortiz, at rortiz@dhhs.nv.gov or 775-684-8619.