Self-Advocacy Role in Leadership/in /by Arc Ny

People with intellectual and other developmental disabilities have the right to participate in decisions about their lives and advocate for public policy that provides the systems and supports they need to participate fully in society

It is The Arc New York’s position that this requires that people with intellectual and other developmental disabilities have the following opportunities and rights:

  • To receive training and/or mentoring so they may participate fully and meaningfully on boards, committees, taskforces and other decision-making bodies that provide oversight and resource allocation in support of their lives.
  • To be selected and/or elected to boards, committees and task forces of local organizations that serve support their lives, including The Arc New York Chapter Boards, Committees and Task Forces.
  • To organize a chapter-level self-advocacy initiative, which informs the board and administration about quality of services and lives of their peers in the organization.
  • To provide input into The Arc New York management, planning and decision making, including representation on The Arc New York Board of Governors, Committees and Task Forces.
  • To receive financial and other supports from service providers and other advocacy organizations to participate in local chapter boards, local and statewide self-advocacy groups, governmental and statewide public policy organizations and national groups they choose and/or are elected to represent themselves and their peers.
  • To have a partnership among people who receive supports, and administrators and agency personnel to reduce barriers to independence and individualization for people with disabilities.
  • To have a partnership among people who receive supports, and administrators and agency personnel to educate the community and others regarding the importance of self-advocacy in our society.
Safety and Protection/in /by Arc Ny

People with intellectual and other developmental disabilities have the same rights and basic safety and protection needs as others. At the same time, they face numerous additional barriers, including protection risks, heightened risk of violence, exploitation and abuse by the general public, service providers, and even their families. People with disabilities are not a homogenous group and safety plans must address the unique needs of each person. Those plans must include protection from harm and injury throughout their lives, while also being provided with the tools and supports necessary to protect themselves.

It is the Position of The Arc New York that:

  • A supportive network of family, friends, and advocates of people with I/DD and other disabilities are often times the first line of protection from harm. However, if for any reason the above groups are the cause of harm, or unable and/or unwilling to provide the necessary protections, the appropriate protective agencies, support, and advocacy groups must be accessible and available to ensure that local, state, and federal laws are adequately enforced.
  • People with intellectual and other developmental disabilities must be given the opportunity to learn to live safely in their community, protect themselves, and be able to seek appropriate assistance.
  • Safety and fire drills must be designed with sensitivity to people’s unique needs and capabilities, particularly when activities occur unexpectedly and quickly.
  • Drills must be planned with sufficient frequency to be realistic and without the possibility for “opting-out.”
  • In accordance with OPWDD regulations and Mental Hygiene Law, parents and/or guardians must be informed of any investigation of abuse and neglect as required and be provided a statement of the final disposition of the investigation
  • Providers of supports and services must:
    • Screen all applicants to eliminate those with a history of perpetrating abuse, neglect, or a criminal record and evaluate all employees in accordance with NYS regulations, including those regarding the Justice Center, OPWDD and NYS Education Department, on a regular basis to ensure appropriate job performance
    • Ensure that appropriate safety and emergency management plans are in place, and that all staff have the associated training and competence to work effectively and appropriately with people with intellectual and other developmental disabilities.
    • Train staff to report allegations of abuse and neglect directly to the Justice Center to ensure the proper procedures are followed to address the allegations.
    • Immediately investigate allegations of abuse or neglect and take immediate corrective action when warranted
    • Take steps to limit access to Personally Identifiable Information(PII) and Protected Health Information(PHI), acknowledging the potentially grave consequences imposed by breaches and a person’s right to privacy. Access must be on a need-to-know basis and safeguards must include use of administrative, physical, and technical means.
Rights/in /by Arc Ny

Individuals with intellectual and other developmental disabilities are first and foremost citizens and as such are entitled to all of the fundamental rights, both explicit and implied, that are guaranteed to, and enjoyed by all people under the Constitution of the United States. They have the right to opportunities that enable them to make choices for themselves and to exert a measure of control over their physical and social environment, without regard to race, gender, sexual orientation, national origin or incarceration. It should be recognized that they may need some accommodations and supports to enable them to exercise these rights and inherent responsibilities.

It is The Arc New York’s position that fundamental rights include but not be limited to the right:

  • To choose a place to live to do productive work, engage in leisure time activities, and to worship.
  • To acquire and maintain adequate financial resources for independent living.
  • To marry and have children.
  • To full information and access to appropriate childcare and parenting skills while the decision to have children is being considered and access to ongoing supports and services once the decision to become a parent has been made.
  • To receive appropriate education and training, rehabilitation, guidance, and counseling.
  • To access all governmental programs in concert with all people.
  • To receive individualized services and technologies designed to meet specific needs and help ensure optimal functioning.
  • To receive appropriate, affordable and accessible wellness services, medical, dental and mental health care.
  • To enhance quality of life through respite care, personal assistance, specialized training, individualized family assistance, retirement and old age planning.
  • To be free from discrimination and the right to receive fair and equal treatment in the criminal justice system.
  • To vote in fully accessible polling places.
  • To protection and advocacy services during all stages of life.
  • To be protected through the application of federal, state and/or local protection laws and regulations, from decisions or lack thereof, made by parents or guardians or service providers when the individual’s life, health, safety or general well-being are compromised.
  • To membership, employment and leadership in The Arc New York, Inc.
  • To any and all other rights enjoyed by all citizens.
Recreation, Leisure, and Social Engagement/in /by Arc Ny

Participation by people with intellectual and other developmental disabilities in the same leisure, recreational and social activities that are offered to all citizens in their communities is an essential aspect of their quality of life. Recreational and leisure activities facilitate the development of community connections and can have significant benefits to physical and emotional health and well-being.

It is The Arc New York’s position that:

  • Access to recreational and leisure activities appropriate to one’s interest and age level is a necessity and has the same level of importance for resource allocation as education, employment and living arrangements;
  • Integrated leisure, recreational and social activities are an essential and legitimate component of a good quality of life for persons with intellectual and other developmental disabilities;
  • Local communities and school districts have a responsibility to ensure that parks, playgrounds, recreational facilities and other outdoor recreational areas are accessible to people with intellectual and other developmental disabilities;
  • Support must be provided and if needed, assistive technology, should be used to increase participation in inclusive recreation and leisure activities;
  • Information and education must be provided to people with intellectual and developmental disabilities and their families to ensure they are aware of the opportunities and benefits of inclusive recreation and leisure activity
Quality Improvement/in /by Arc Ny

High-quality standards must be reflected throughout the full continuum of services and supports for people with intellectual and other developmental disabilities and within the work environment of the people who support them. Quality is reflected in high levels of personal satisfaction with life situations andevidenced by measurable outcomes and a continuous improvement process. Person-centered service planning and delivery, community inclusion, protection, and safety are an essential part of The Arc New York’s core values

It is the Position of The Arc New York that quality supports and services can be enhanced when the following occur:

  • Quality is defined by the person and their support network.
  • The person, their family, and their support network, drive the design of the supports and ensure that these supports are available in the person’s home community.
  • Providers respect the rights, dignity and privacy of people and provide supports in the least restrictive manner.
  • People and their support network have the ability to explore options and make informed decisions.
  • Supports are person-centered and reflect an integrated process regardless of the person’s diagnosis and build upon the person’s strengths and talents in a positive manner.
  • Appropriate levels of resources are offered to the person, to include quality staffing and a broad array of supports, in a timely fashion.
  • Providers of supports and services must be in compliance with all regulatory authorities.
Public and Media Recognition of Persons with Intellectual and Other Developmental Disabilities/in /by Arc Ny

People with intellectual and other developmental disabilities are fully participating members of society and their community. Recognizing a person with I/DD is equally as valuable as any other member of the community that has made an important contribution.

It is the Position of The Arc New York that every effort must be made to:

  • Promote and support people with intellectual and other developmental disabilities to speak, advocate and represent themselves publicly.
  • Promote and encourage the presentation of stories with positive and meaningful news that recognize the accomplishments of people with intellectual and other developmental disabilities.
  • Seek to identify, correct and/or eliminate the use of terms which are pejorative and can devalue people, including any version of words which are historical, dated or arcane, such as “retarded or mentally retarded”.
  • Support and promote the development and presentation of educational curricula across all grade levels in New York state schools, which explains the history and accomplishments of people and systems in the field of disabilities.
  • Use any and all public means and forms of media to promote persons with intellectual and other developmental disabilities in a manner which celebrates and reinforces their talents, skills and value as productive members of our communities.
  • Serve as an example, through a Chapter commitment, to employ and recognize people with intellectual and other developmental disabilities in valued employment and leadership roles.
Positive Behavioral Supports/in /by Arc Ny

People with intellectual and other developmental disabilities enjoy the most satisfying and productive lives under conditions which promote and reward positive social relationships and emotional wellbeing. When challenging behaviors occur that prevent any person from enjoying a satisfying and productive life, the supports provided shall be individualized and respectful of the person. Supports and services must be developed in collaboration with the person and the support network in a respectful and sensitive manner. Positive behavioral supports and interventions is a framework for assisting staff in adopting and organizing evidence-based behavioral interventions which enhances social behavior outcomes while increasing and maintaining positive relationships with others.

It is The Arc New York’s position that:

  • Every person has the right to compassionate and effective behavioral supports for managing challenging behaviors through the use of positive reinforcement.
  • Challenging behaviors may be caused by medical, psychological, communications and/or environmental difficulties. All efforts must be made to understand the etiology of the behavior and appropriate ways to ameliorate the cause.
  • Challenging behaviors can be reduced or eliminated when accurate, comprehensive information is collected, analyzed and used for planning prior to initiating a plan. Properly applied positive techniques can influence long-term behavior change and eliminate the use of physical interventions.
  • Treatment, management and prevention of challenging behaviors is the responsibility of all support providers and must be overseen by qualified professionals who are certified and/or experienced in proven methods, such as applied behavior analysis.
  • The use of any kind of intervention by staff that restricts a person’s personal rights must be reviewed on a regular basis by the Human Rights Committee.
  • The person must be engaged in activities that encourage choice and successful experiences. Supports must focus on providing valued and valuable activities which counteract boredom, coercion and lessen the restriction of freedoms.
  • Ongoing training for staff and families in effective and positive methods for managing challenging behaviors is an important part of providing a supportive environment and long-term changes for the person.
  • Supports and services must be provided in a manner that maximizes access and participation in the full range of opportunities available in the home, school and community.
  • Total organization commitment requires an investment in staff training to develop specific competencies which promote person-centeredness and positive practices.
People with I/DD and Co-Occurring Mental Illness/in /by Arc Ny

The response to support and service needs of all people with I/DD and co-occurring mental illness (MI), also known as dual diagnosis, is of deep concern. New York state I\DD and mental health (MH) authorities, responsible for funding and monitoring vital services are uneven in how they fund and support the service needs of people. At times, publicly funded programs are hard-pressed 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 lives in the community.

According to a National Core Indicators data brief, almost half of people with I/DD meet the criteria for dual diagnosis. Despite the prevalence of mental health needs among people with I/DD, little is known about the best approaches for supporting the needs of people with I/DD and co-occurring mental health challenges and their families. This uncertainty has led to the dependence on outdated and potentially poor approaches to mental health care, such as seclusion, restraint, and psychotropics. Given the lack of support resources and services available for people and their families, the use of the aforementioned options may cause people with dual diagnosis to increasingly struggle with poor mental health.

Some people with dual diagnosis are not able to access the treatment they need because they are effectively excluded from inpatient services. People have been turned away from inpatient treatment because the facilities opined that people were not able to benefit from psychiatric treatment. People, finally admitted after prolonged periods of suffering, were able to benefit from treatment, establish a psychiatric regime that was effective, and go on to live their lives in a safer and happier fashion.

OPWDD and OMH have worked to develop specialized, multi-disciplinary, inpatient psychiatric units for children ages 5 to 21 who are dually diagnosed and the expansion of Crisis Services for Individuals with Intellectual and Developmental Disabilities (CSIDD). While these units have proven to be successful in transitioning children with psychiatric support needs into their communities, gaps exist for the adult population with similar support needs.

It is The Arc New York’s position that:

  • Appropriate funding and attention to comprehensive supports and services provides the most person-centered and cost-effective way of supporting this substantial population.
  • Comprehensive training and education for staff, clinicians, first responders, and all professionals who support people with I/DD in the community is needed to support people with complex needs.
  • Greater access must be provided to CSIDD and specialized, multi-disciplinary, inpatient psychiatric units and crisis services forpeople of all ages with dual diagnosis.
  • The state must designate an existing psychiatric hospital as a regional center for excellence, equipped with advanced training in dual diagnosis and necessary telecommunication tools for consultation purposes.
  • Alternative services must be readily available to providers who have exhausted all other options in their due diligence to meet the needs of people with highly complex needs and for the safety other people and staff
  • The state must support the 988 Suicide and Crisis Lifeline through continued and adequate state funding and training focused on the support of people with I/DD and dual diagnosis.
  • Comprehensive instruction across all medical professions and in every setting must include awareness on how to address the needs of people with a dual diagnosis, particularly during medical emergencies.
Pandemic/Public Health Emergency Response/in /by Arc Ny

People with intellectual and other developmental disabilities must be recognized as a priority during all public health emergencies (PHE), especially epidemics and pandemics. People with I/DD have the right to the availability of medical care and treatment, as well as essential and required supplies, including first-tier access for vaccinations and pharmaceuticals.

As a practical example of this issue, the COVID-19 pandemic presented significant challenges for people with I/DD and providers of supports and services. The lacking accessibility to appropriate medical care and severely limited supplies exacerbated the fear of many that COVID-19 posed a graver threat to this vulnerable population. This fear was well-founded.

In New York state, people with I/DD living in residential group homes were nearly four times as likely to contract COVID-19 and twice as likely to die. 2 Another study took into consideration the national impact of those with I/DD across various residential models and found that people with I/DD were potentially six times more likely die from the virus as compared to the general population.

These studies illuminate some of the unique health uncertainties and access to care faced by people with I/DD upon the onset of a PHE. However, disruption to the continuum of supports and services also contribute to other negative health outcomes, such as the upending of progress towards greater community integration. This can affect numerous aspects of their lives, including but not limited to their employment via state-funded employment support, private employment, volunteering, day services, and other activities of their choosing that are vitally necessary.

It is The Arc New York’s position that:

  • People with intellectualand other developmental disabilities must not be overlooked and be a priority to policy makers at all levels of government. It must be recognized that people with I/DD are more likely to have preexisting conditions, co-morbidities, and are more apt to live in congregate settings such as group homes, which places them at a higher risk of infection
  • OPWDD must seek out and create service delivery, billing, and hiring flexibilities upon declaration of a PHE, which must be inclusive of but not limited to remote service delivery options for day, vocational and employment, including prevocational services.
  • Telehealth services for all medical diagnoses is essential, especially for mental health care. This ensures that no person is without access to care, regardless of where care is administered
  • Direct Support Professionals and all other staff working for provider organizations who support people with I/DD, must be immediately designated as essential workers alongside other frontline healthcare workers. This must include all hazard pay and additional benefits provided to essential healthcare workers in recognition of the work they do during a pandemic or similar PHE
  • Local, state, and federal governments, medical practitioners, and facilities must provide and support full, equal, and priority access to medical care including vaccines, boosters and advanced treatment
  • Providers of supports and services must ensure that all staff have the proper training, access to supplies, and competence to work during a pandemic or public health emergency
  • OPWDD and NYS DOH must provide regular access to up-to-date data relating to the impacts of a PHE on people with I/DD, staff, and families to all stakeholders
  • Monitoring the short- and long-term effects on people with I/DD throughout and following a pandemic or similar PHEs will assist future preparation response and prevention of negative health outcomes
Medical Aid in Dying/in /by Arc Ny

Individuals with intellectual and developmental disabilities are, first and foremost, citizens, and are entitled to all the fundamental rights, both explicit and implied, that are guaranteed and enjoyed by all people under federal and state laws. Therefore, The Arc New York asserts that any rights included in any laws legalizing medical aid in dying should be guaranteed to people with intellectual and developmental disabilities.

It is The Arc New York’s position that:

Mentally competent adults capable of making decisions for themselves who are dying of a terminal illness (typically 6 months or less to live) should have the option to obtain a prescription from their physician for medication if end-of-life suffering becomes unbearable so they can bring about a peaceful death.

  • Additional protections must be in place for individuals with intellectual and developmental disabilities, beyond requiring two physicians to sign off and a mental health referral if mental capacity is in doubt.
  • Prior to providing a prescription medication, physicians should be required to confirm that terminally ill, mentally competent adults are fully informed about all end-of-life options, including comfort care, hospice care, pain control, and medical aid in dying.
  • Giving mentally competent, terminally ill adults the choice to end their own life is the same as allowing competent, terminally ill adults the choice to decline other treatments, like CPR, intubation, and artificial nutrition.
  • The wishes of mentally competent adults who have clearly and competently expressed them should be honored by caregivers and health care providers.
  • All persons with intellectual and developmental disabilities are valuable and deserve respect consistent with human dignity throughout their life. The value of a person’s life is not related to the type, degree, or severity of disability.
  • The personal autonomy, liberty, freedom, and dignity of each individual with intellectual and developmental disabilities must be respected and supported.