Archive for: Related to Life in the Community

Basic and applied research on the causes, challenges and treatment of intellectual and developmental disabilities, as well as research on interventions and services which could improve the lives of people with intellectual and/or developmental disabilities, must be adequately financed, well designed, focused on relevant topics, conducted with the highest ethical standards, presented in formats accessible to multiple audiences, and have a positive impact on people’s lives.

Issue:

Between 1% and 3% of persons in the general population are estimated to have some degree of intellectual disability and/or developmental disability. The exact number of people affected by intellectual and/or developmental disabilities is unknown, because individuals with intellectual and/or developmental disabilities cover a wide range of conditions, many of which are diagnosed several years after birth.

A variety of government agencies are responsible for undertaking vital research and data collection activities regarding the impact of disability and to improve the quality of life for children and adults with intellectual and/or developmental disabilities. Government and private funding is insufficient to support the broad research agenda that includes issues most important to people with intellectual and/or developmental disabilities and their families. Through basic and applied research, scientists and researchers can learn about causes of intellectual and/or developmental disabilities, address its preventable causes, improve the quality of life of people with intellectual and/or developmental disabilities and their families, and address policy and service-delivery enhancements. Researchers can identify the most promising educational, social and clinical interventions that help people live meaningful lives.

Historically, most people with intellectual and/or developmental disabilities and their families have not had input into the design, methodology, dissemination, use, and evaluation of research. Moreover, most research results have not been presented in ways which are accessible, understandable and useful for multiple audiences, including people with intellectual and/or developmental disabilities and their families.

While clinicians play an essential role in the evaluation and treatment of associated medical conditions and preventive care, and in facilitating and coordinating consultative services and community-based care, their awareness of the latest research findings and standards of integrated care vary, often leaving it to families to advocate and become the point of integration for their loved one. In addition, recent studies unknown to many (including clinicians), and in particular the availability of agnostic techniques such as genome-wide association studies, have identified new variants in a variety of genes which contribute to the risk of individuals with intellectual and/or developmental disabilities.

Advances in medical and behavioral science and research that relates to intellectual and/or developmental disabilities can be of great interest and benefit to individuals, their families, guardians and services providers.

In turn, science & research organizations can benefit from broad awareness of these individuals and their
families, however these organizations often have limited knowledge of or connection to these individuals and their families and vice versa.

It is the position of The Arc New York that:

• Government and private entities must provide adequate funding to support research on individuals with intellectual and/or developmental disabilities;
• The Research priorities set by funding sources, public policy-setting bodies, and academic and professional associations must reflect the research needs and interests of people with intellectual and other developmental disabilities;
• Advances in medical/behavioral research which can provide for an earlier diagnosis (and potential treatment) of individuals with intellectual and/or developmental disabilities and/or the associated symptoms will allow for early intervention and better clinical management, thus improving the quality of life of the individuals and their families;
• In addition to causation and prevention research, priorities must promote and encourage basic and applied studies that focus on and help to enhance the quality of life for people with intellectual and other developmental disabilities;
• In parallel policies, practices and supports for people with intellectual and/or developmental disabilities must keep pace with developing knowledge. Promote translation of research findings into practice;
• Data based studies using relevant criteria, must be used to assess the effectiveness of a program or service in achieving its desired outcomes, and/or to compare the relative effectiveness of alternative programs or services;
• The Research must identify and support practical applications to address the daily needs of people with intellectual and other developmental disabilities and their families. Researchers must also consider the cultural, ethnic, racial, geographical and other differences that affect people’s access to and ability to
  benefit from programs and services designed to serve them;
• Disability status should be incorporated in federally funded research;
• Advocacy, services providers and professional organizations, government agencies, the research community, and people with intellectual and/or developmental disabilities and their families must work together in defining, evaluating, and promoting a research agenda;
• Research on emerging interventions within properly regulated clinical trials and ensure must ensure that people with IDD are not excluded from benefitting from effective healthcare, and that those who can give informed consent are not categorically excluded;
• Results of research must be available in multiple formats, easily accessible and understandable for a wide audience, including people with intellectual and/or developmental disabilities and their families;
• Stringent scientific and ethical standards must be enforced to safeguard individual dignity, protect confidentiality, ensure efficient and effective use of research funds, and prevent exploitation or harm of people with intellectual and/or developmental disabilities and members of their families;
• For all basic and applied research involving persons with intellectual and/or developmental disabilities:
  • Specific procedures must be implemented to ensure full voluntary, informed, initial, and ongoing agreement and consent to participate
  • All research must be conducted by qualified researchers, in adequately monitored settings and reviewed for potential risk and benefit by qualified, competent scientific review boards
  • Persons with intellectual and/or developmental disabilities should not be excluded from research that might benefit them as members of the general population
  • Entities involved in conducting and financing basic and applied research should ensure that policies and standards with specific guidelines and safeguards are in effect to protect persons with intellectual and/or developmental disabilities and their families
  • The ethical use of data and computerized forms of analytical computations must be overseen and guaranteed by federal, state, educational, and other entities involved with research

The Arc New York is committed to identifying and promoting research-based best practices, setting high standards for direct services and measuring outcomes.

Assistive technology, sometimes termed Supportive Technology, refers to devices and services that are used by children and adults with intellectual and other developmental disabilities throughout the country which can lead to increased choice over day and residential placements. These devices provide supports to promote an individual’s independence, mobility, communication, environmental control, health and wellness, life skills management, employment skills, and choice. Assistive technology helps the individual with daily life functions and facilitates inclusion in the community. Assistive technology also includes evaluations, direct services and training that assists the individuals with selecting, acquiring or using such devices and the software applications which are most appropriate and available.

It is The Arc New York’s position that:

• It endorses the Coleman Institute’s Declaration on The Rights of People with Cognitive Disabilities to Technology and Information Access and encourages passage of this declaration in New York State;
• New York State should maximize technology where it can benefit the lives of the people we support;
• Assistive technology must be readily available and affordable throughout the life span of individuals with intellectual and other developmental disabilities;
• Assistive technology should seek to include upgraded versions which remain actively supported by their vendors so that people with intellectual and developmental disabilities can expand their knowledge, their educational opportunities, and lead an inclusive and integrated life;
• The term “assistive technology” should be considered to include everyday personal technology like smart phones and tablets, which are universally accepted in society, thereby lessening the stigmatization that may come from the use of more disability-specific and more costly traditional AT devices;
• Technological innovators, designers and manufacturers must be educated to the needs of individuals with intellectual and other developmental disabilities to ensure the design and development of useful products. The best method of this education process is to include people with intellectual and other disabilities in the identification of their needs and to include them in the design and testing of assistive technology devices;
• Much of the focus of traditional assistive technology has been applied to the sensory and motor needs of individuals. We now believe there needs to be new research done on developing assistive technologies that address the complexity of cognitive disabilities that prevent many individuals to be fully included in the daily activities of life in their community;
• People with intellectual and other developmental disabilities, their families, educators and support professionals must be educated about the benefits of assistive technology;
• Individuals knowledgeable about people with intellectual and other developmental disabilities and familiar with current technology must be also become well versed in person-centered approaches and practices, so that their technology assessments take into consideration the global lifestyle needs of the
  person to ensure the selection of the most appropriate and comprehensive technologies;
• Professionals in the field must be well informed of funding and resources for assistive technology. It is essential that information and assistance in how to acquire and sustain assistive technology be provided to persons with intellectual and other developmental disabilities and their families, especially through life milestones, as in the transition of an individual from school to adult systems, where the ensured portability and transferability of personal technology is critical. There should be relevant public policy for funding access to technology as well as training and support.

ISSUE

People with IDD lack sufficient access to reliable, accessible, and safe modes of public and private transportation. Every mode of transportation, including air, water, road, rail, and even pedestrian transportation, presents barriers for individuals with IDD. These barriers prevent people with IDD from meaningful participation in everyday activities that promote high quality community living experiences. In the U.S., millions of individuals with disabilities use public transit to maintain their autonomy and participate fully in society. For many, it is their only transit option. However, even where accessible public transportation exists, adults with IDD consider transportation options inadequate.

Federal and state legislation encourages economic self-sufficiency for people with all types of disabilities, which requires transportation. Inadequate transportation inhibits community involvement, including successful employment. Where there is available transportation, there is often little to no training available to support individuals with IDD to make full use of it. For those providing the transportation, there is insufficient training to understand and meet their customers’ needs, including cultural competencies. Those living in rural areas often face the greatest challenge of all due to lack of public transportation, limited private transportation options, and long distances between destinations.

POSITION

Transportation industries, agencies, service providers, and advocacy organizations must ensure that:

• Transportation at comparable cost and service models is available to individuals of all abilities.
• When making decisions, planning, and testing transportation options and payment methods, individuals with IDD are involved in the process.
• Improved coordination maximizes existing transportation services.
• Public transportation is adequately funded, fully financially and physically accessible, reliable to meet people’s needs, and equipped to suit the physical, sensory, and cognitive needs of all people.
• As technological innovations emerge (such as virtual wayfinding, autonomous vehicles, and digital ticketing), transportation modalities are designed to be accessible, usable, and reliable, including such things as language access, visual cues, safety considerations, and audio and hands-free options to meet individuals’ needs and preferences.
• Technological platforms that relay information from users with IDD to transportation providers utilize inclusive research design to ensure accessibility and ease of use.
• Travel training is available for users covering all modes of travel, prioritizing peer-to-peer training where possible.
• Appropriate disability awareness training is available for service and transportation providers.
• As smart city initiatives advance, they are developed for users of all abilities and needs. Data collection and migration tools include users with IDD in the design, to ensure inclusive smart cities.
• The unique challenges and lack of options within suburban and rural areas are addressed.
• Technology and service providers protect a user’s privacy by ensuring data such as contacts, camera, photos and files, health and disability status, and locations visited is not shared, or used for commercial or tracking purposes, without permission of the individual. For any information to be accessed or shared, customers must opt-in, versus opting-out, and have clear explanations of with whom and what will be shared. In light of data management, people with IDD must have the opportunity to receive training on self-directed data management and use.
• At the same time, transportation navigation software allows an individual to share appropriate information with a third party, to enhance efficiency and safety – for example, confirming arrival and indicating off-route warnings, as directed by users.
• Innovative vehicles and transportation options do not create additional barriers, based on where vehicles are parked, stored, and operated.
• People with IDD have the option of owning, modifying, and operating vehicles and other transportation options of their choice at affordable costs.
• All vehicles, public and privately owned, meet applicable federal, state, and local safety requirements.
• Autonomous Vehicles (AVs) are fully accessible and universally designed to take into account all individuals’ abilities and disabilities to safely access and operate. Regulation of AVs must consider the needs of people with IDD, and avoid unnecessary licensing requirements that would restrict or eliminate access.

Rev’d 2020

Joint Statement with the American Association on Intellectual and Developmental Disabilities (AAIDD).

¹Intellectual Disability (ID) is a lifelong condition where significant limitations in both intellectual functioning and adaptive behavior emerge during the developmental period (before adulthood).
Developmental Disabilities (DD), first defined in 1975 federal legislation now known as “The DD Act”, are a group of lifelong conditions that emerge during the developmental period and result in some level of functional limitation in learning, language, communication, cognition, behavior, socialization, or mobility. The most common DD conditions are intellectual disability, Down syndrome, autism, cerebral palsy, spina bifida, fetal alcohol syndrome, and fragile X syndrome.
The acronym “IDD” is used to describe a group that includes either people with both ID and another DD or a group that includes people with ID or another DD. The supports that people with IDD need to meet their goals vary in intensity from intermittent to pervasive.

ISSUE

For decades, people with intellectual disability and/or developmental disabilities have been thought to be asexual, having no need for loving and fulfilling relationships with others.

Individual rights to sexuality, which is essential to human health and well-being, have been denied. This loss has negatively affected people with intellectual disability in gender identity, friendships, self-esteem, body image and awareness, emotional growth, and social behavior. People with intellectual or developmental disabilities frequently lack access to appropriate sex education in schools and other settings. At the same time, some individuals may engage in sexual activity as a result of poor options, manipulation, loneliness or physical force rather than as an expression of their sexuality.

POSITION

Every person has the right to exercise choices regarding sexual expression and social relationships. The presence of an intellectual or developmental disability, regardless of severity, does not, in itself, justify loss of rights related to sexuality.

All people have the right within interpersonal relationships to:

• Develop friendships and emotional and sexual relationships where they can love and be loved, and begin and end a relationship as they choose;
• Dignity and respect; and
• Privacy, confidentiality, and freedom of association.

With respect to sexuality, individuals have a right to:

• Sexual expression and education, reflective of their own cultural, religious and moral values and of social responsibility;
• Individualized education and information to encourage informed decision-making, including education about such issues as reproduction, marriage and family life, abstinence, safe sexual practices, sexual orientation, sexual abuse, and sexually transmitted diseases; and
• Protection from sexual harassment and from physical, sexual, and emotional abuse.

With respect to sexuality, individuals have a responsibility to consider the values, rights, and feelings of others.

With respect to the potential for having and raising children, individuals with intellectual or developmental disabilities have the right to:

• Education and information about having and raising children that is individualized to reflect each person’s unique ability to understand;
• Make their own decisions related to having and raising children with supports as necessary;
• Make their own decisions related to using birth control methods within the context of their personal or religious beliefs;
• Have control over their own bodies; and
• Be protected from sterilization solely because of their disability.

Rev’d 2013
Joint statement with the American Association on Intellectual and Developmental Disabilities (AAIDD).

¹“People with intellectual disability and/or developmental disabilities” refers to those defined by AAIDD classification and DSM IV. In everyday language they are frequently referred to as people with cognitive, intellectual and/or developmental disabilities although the professional and legal definitions of those terms both include others and exclude some defined by DSM IV.

ISSUE

Often, people with I/DD face greater economic inequalities than their peers without disabilities. People with I/DD also typically have not had adequate supports for full participation in financial life and decision-making, including earnings, saving, budgeting, spending, investments, and estate planning.

When people use government benefits, certain income-based and/or asset-limit eligibility policies put some people at risk of being denied for and/or losing critical supports such as Medicaid, Supplemental Security Income, and Social Security benefits if they earn or save very modest sums of money. While some savings are allowed through certain self-settled trusts and the ABLE Act which accommodate SSI and Medicaid means-testing rules, these plans do not address the needs of everyone. Thus, many people with disabilities cannot plan and save for future needs like others, contributing to ongoing economic inequalities often resulting in lifelong poverty. Public policy should encourage rather than inhibit planning for financial independence, productivity, and self-determination.

In addition, families are the largest group of providers of physical, material, and emotional supports for people with I/DD across the life course. Families incur increasing amounts
of out-of-pocket expenses due, in part, to the decreasing federal funds contributing to family support services² in the states. Many families are restricted to a single income or underemployment due to the necessity to provide medical care or supports to their family member with I/DD. This greater reliance on family support requires families to explore and invest in a variety of financial security strategies to ensure opportunities for self-directed options and family quality of life.³

POSITION

Individuals with I/DD and their families should have equal access to economic self-security, including opportunities to save money and build financial assets to maintain or improve their basic economic and social status, strengthen their financial security, and save for retirement through education, financial literacy, employment, home ownership, and asset development.

These opportunities should include the following:

• Access to Individual Development Accounts (matched savings accounts similar to a 401(k)) that enable a person to save for education, home ownership, or one’s own business and/or employment;
• Ensuring that government assistance programs allow people to retain reasonable portions of their income for daily living expenses, and permit savings. Access to low-cost, user-friendly approaches such as ABLE accounts (savings accounts that enable eligible individuals to save for disability related expenses), for people with disabilities of all ages, for acquiring, maintaining, and expending assets while remaining eligible for publicly financed services and benefits;
• Equity with other savings programs, such as catch-up provisions and reasonable increases and limits on contributions and maximum contributions;
• Ensuring incentives in the tax code for charitable gifts and special needs trusts (a legal vehicle that manages funds for the benefit of a person who needs some assistance in daily living); and
• Ensuring that tax rates for wealth accumulation by people with disabilities (such as special needs trusts) are not excessive.

Policy reforms must allow people with I/DD to have opportunities to earn money and invest in their futures without risking the health care, benefits, and supports and services necessary to live a full life in their community.

On a personal level, people with I/DD and their families should have opportunities to learn how to manage their money and spend it wisely through such means as:

• Supports for full participation in financial planning and decision-making, including earnings, saving, budgeting, spending, investments, including tax-deferred investments like IRAs and 401(k)s, and estate planning;
• Financial literacy education throughout the school years and, particularly, contemporary practices in financial literacy curricula in high schools and other educational settings;
• Inclusive adult and higher education and consultation/coaching in communities;
• Access to free information in user-friendly print and electronic formats (similar to materials produced by the Consumer Financial Protection Bureau); and
• Training for human services support and professional staff, advocates, bank/credit union and investment personnel, and government officials (from service coordinators to Internal Revenue Service (IRS) staff ) in how best to help people enhance their assets.

Rev’d 2016
Joint statement with the American Association on Intellectual and Developmental Disabilities (AAIDD).

¹“People with intellectual disability (ID)” refers to those with “significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. This disability originates before age 18,” as defined by the American Association on Intellectual and Developmental Disabilities (AAIDD) in its manual, Intellectual Disability: Definition, Classification, and Systems of Supports (Schalock et al., 2010), and the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5), published by the American Psychiatric Association (APA, 2013). “People with developmental disabilities (DD)” refers to those with “a severe, chronic disability of an individual that- (i) is attributable to a mental or physical impairment or combination of mental and physical impairments; (ii) is manifested before the individual attains age 22; (iii) is likely to continue indefinitely; (iv) results in substantial functional limitations in 3 or more of the following areas of major life activity: (I) Self-care, (II) Receptive and expressive language, (III) Learning, (IV) Mobility, (V) Self-direction, (VI) Capacity for independent living, (VII) Economic self-sufficiency; and (v) reflects the individual’s need for a combination and sequence of special, interdisciplinary, or generic services, individualized supports, or other forms of assistance that are of lifelong or extended duration and are individually planned and coordinated,” as defined by the Developmental Disabilities Assistance and Bill of Rights Act 2000. In everyday language, people with ID and/or DD are frequently referred to as people with cognitive, intellectual and/or developmental disabilities.

²From The Arc and AAIDD position statement on Family Support: http://www.arcmulti.wpengine.com/who-we-are/position-statements/life-in-the-community/family-support

³Braddock, D., Hemp, R., Rizzolo, M.C., Tanis, E.S., Haffer, L., & Wu, J. (2015). The State of the States in Intellectual and Developmental Disabilities: Emerging from the Great Recession. Washington, DC: American Association on Intellectual and Developmental Disabilities (AAIDD).