Medicaid/in /by Arc Ny

Since the late 1970’s, the Federal/State Medicaid program has ensured that, nationally, at least 2 million people with intellectual and other developmental disabilities have access to health care and/or long-term services and supports.

Since 2010, federal and state policymakers have critically examined and curtailed Medicaid funding, resulting in compromising desired individual goals and quality of life for people with developmental disabilities. We must continue to educate and advocate with key decision makers at the state and federal level to ensure that Medicaid remains responsive to the critical needs of people with intellectual and other developmental disabilities.

It is The Arc New York’s position that to address the present and emerging needs of people with intellectual and other developmental disabilities:

  • The New York State Medicaid program should assist people with intellectual and other developmental disabilities to live full lives in the community, experience a high quality of life, and achieve economic security and personal independence to the extent possible for the individual;
  • People with intellectual and other developmental disabilities are entitled to a full range of Medicaid financed health care and long-term services across their lifespan;
  • Families should not be required to impoverish themselves, use personal funds, nor be required to keep an individual at home to receive the essential health and social supports the individual needs to live;
  • Services should be received with reasonable promptness and with sufficient quality and quantity to meet their individual needs;
  • Funding should prioritize the least restrictive alternatives possible for each person;
  • Medicaid must afford individuals and families opportunities to design and direct their own services to the extent that they wish and with the assistance they need;
  • Services should be portable across all geo-political jurisdictions;
  • Any effort to change or otherwise reform the Medicaid program must take into account the impact of such change upon individuals with intellectual and other developmental disabilities, in order to prevent unintended harmful consequences;
  • The quality and effectiveness of health and long-term services and supports for persons with intellectual and other developmental disabilities depends upon qualified service providers with necessary skills and training. Federal and state responsibility for service quality, therefore, should include assuring sufficient recruitment, retention, and training of, as well as appropriate pay for, the personnel who provide needed services and supports;
  • Medicaid-based provider reimbursement systems must provide for fiscal sustainability for organizations. This would include enough funding to give sufficient compensation for staff, but minimally a living wage and competitive fringe benefits;
  • There must be timely reimbursement for all actual and reasonable costs;
  • Medicaid-based provider reimbursement systems for the non-profit sector should be funded at an adequate level that provides the providers the flexibility necessary to navigate business requirements yet provide quality programs, support and services;
  • Medicaid reform should address having flexibility in how wait lists are accessed and managed, the quality of service of providers and staff, and increased availability of quality health care services for individuals with intellectual and other developmental disabilities;
Managed Care/in /by Arc Ny

Managed care may provide states and the federal government with the opportunity to reduce healthcare expenditures and better manage utilization, while improving quality and outcomes. Understanding what New York state intends to achieve by transitioning people with intellectual and other development disabilities to managed care is key to informing design decisions. Meaningful stakeholder engagement and education are vital for the program success.

The overarching goal for people with intellectual and other developmental disabilities supported in a managed care system must be quality driven and person/family centered. The supports offered must be integrated and coordinated, blending needed medical services with habilitation services in all life domains, without barriers for opportunity or access. Managed care payment models must provide sufficient resources and flexibility to both the person and the larger population, and must also allocate adequate administration payments to providers.

Regardless of the service delivery/payment strategy developed, a seamless “no wrong door” philosophy and practice, coupled with person-centered outcome measures aimed at enhancing quality of life, must be actionable in every life domain.

It is the Position of The Arc New York that managed care will best serve the health and habilitation needs of people with I/DD when:

  • There are meaningful opportunities for stakeholder feedback during the design phase of the program.
  • Care management roles are clearly defined.
  • Funding for the implementation and operation of managed care cannot come from the operating budgets of providers delivering supports and services to people with intellectual and other developmental disabilities or from the existing resources of the OPWDD system. Any attempt to do so would exacerbate the financial crisis faced by all voluntary providers already facing hardship.
  • I/DD providers receive dedicated training and communication resources before, during, and after transition to managed care.
  • Educational materials and notices relating to the transition to managed care are written in a way that people with I/DD and their families can easily understand, so as to ensure people understand what is changing, what is staying the same, that they have choices and rights, how to exercise their rights, and where to go for help.
  • Once managed care is operational, ongoing engagement is key to ensuring Managed Care Organizations (MCOs)are complying with program standards delivering on the promise of managed care.
  • Services and supports are delivered in a quality manner that maximizes personal well-being.
  • Protections, health and safety, and rights are addressed in the determination of supports offered.
  • Financial constraints are not the prevailing fact or driving the system.
  • Quality metrics are meaningful and reflect the unique needs of the I/DD population, including personal outcome measures, and need to reflect long-term care, as well as acute healthcare needs of people with intellectual and other developmental disabilities.
  • No one is denied access to needed supports and services and everyone receives them in a timely fashion.
  • Services and supports are offered and coordinated within the person’s community.
  • MCOs have significant expertise in serving the I/DD population and their needs
  • Provider networks account for longstanding relationships between members and their providers.
  • State oversight of MCOs is strong in order to ensure continued access to services and compliance with consumer and provider protections.
  • The payer agencies and the agencies delivering supports, work together for the common good of the person being supported.
  • Independent Ombudsman programs are in place to ensure that enrollees can both navigate the system and have continued access to the services they need.
Justice and Fair Treatment Under Criminal Law/in /by Arc Ny

The Constitution and Bill of Rights protect and guarantee fair treatment in the criminal justice system to all individuals, including those with intellectual and other developmental disabilities.

It is The Arc New York’s position that:

  • Fair treatment requires consideration of all aspects of the individual and his or her circumstances, including the presence of intellectual and other developmental disabilities.
  • It is essential that defense lawyers, prosecutors, judges, court personnel, forensic evaluators, law enforcement personnel, victim assistance providers and criminal justice policymakers be informed about intellectual and other developmental disabilities as they affect the behavior of an individual, in order to ensure fair treatment.
  • Advocates who understand intellectual and other developmental disabilities and the criminal justice system must be made available to confer with individuals with intellectual and other developmental disabilities prior to and during questioning by law enforcement personnel.
  • The local chapter, The Arc New York and The Arc are the preferred sources of information on issues relating to people with intellectual and other developmental disabilities for the purpose of education, training and support with the criminal justice system and related personnel
  • The criminal court system must recognize that the presence of intellectual and other developmental disabilities does not necessarily affect the credibility of a witness if the necessary and appropriate supports are provided.
  • Sentencing, treatment, habilitation or other services for individuals with intellectual and other developmental disabilities must take the disability into consideration.
  • Opportunity for treatment or services shall not be denied to people with intellectual and other developmental disabilities, solely on the basis of criminal charge or background.
  • The presence of intellectual and other developmental disabilities may raise issues of miscommunication, misinformation and a challenge to providing an adequate defense to the extent that imposition of the death penalty is unacceptable.
  • We acknowledge that in 2004, the death penalty was declared unconstitutional by the New York Court of Appeals. We are ever watchful of any changes that might occur and stand in solidarity with individuals with intellectual and developmental disabilities who may be subject to the death penalty in other states and territories.
  • When an individual has been court-ordered to the custody of the Office for Persons With Developmental Disabilities, the individual must be provided with appropriate clinical treatment and opportunities for re-introduction into society.
Inclusion and Community Participation/in /by Arc Ny

Extraordinary changes have occurred in the lives of people with intellectual and other developmental disabilities since the founding of The Arc New York in 1949. Prior to that people lived in institutions and/or homes that segregated them from society. They were often denied the opportunity to enrich their daily lives through mainstream involvement in the community. At the same time, the rest of the community was equally cut off and denied the opportunity to enrich their own lives through knowing and being in relationship with these people. The full presence and inclusion of people with intellectual and other developmental disabilities enriches the entire community.

Disability inclusion means understanding the relationship between the way people function and how they participate in society, making sure everyone has the same opportunities toparticipate in every aspect of life to the best of their abilities, and desires. Community inclusion encompasses: housing, employment, friends, education, health and wellness,religion and spirituality, family, and intimacy.

It is The Arc New York’s position that:

  • People with intellectual and other developmental disabilities are our family members and friends in the community. Community inclusion cannot be dependent on “community education.” The more that people with intellectual and other developmental disabilities are present and participating as citizens in their community, the fuller it becomes for everyone.
  • An inclusive community must be provided which allows opportunities for people with intellectual and other developmental disabilities and their families to have choices in where they live and in all aspects of community life. Public as well as private resources must be readily available to them.
  • People with intellectual and other developmental disabilities need access to all aspects of community life. The supports to access their choices need to change as the person’s life changes.
  • Children and adults with intellectual and other developmental disabilities must have the right to access and be supported in recreation, lifelong learning, work, healthcare, sports, social, cultural, and spiritual activities.
  • Adults with intellectual and other developmental disabilities must have the right to engage in relationships that range from friendships to choice of life partners.
Family Support/in /by Arc Ny

The Arc New York believes that the ability of families to attain a desirable lifestyle for themselves and their family member with intellectual and other developmental disabilities should be maintained and continually strengthened.

It is The Arc New York’s position that:

  • We strive to address unmet needs on every level in whatever way is most effective.
  • When properly resourced, the family is usually the best source of support for an individual with intellectual and other developmental disabilities. No family or caregiver should be under strain or duress as they strive to provide for the basic needs of their loved ones.
  • Family opinions, concerns and interest must always be listened to and be included in service planning and in every facet of the individual’s life.
  • In addition to family, other supports and services must be available throughout the life of the individual. In some instances, appropriate support for the family of an individual with I/DD may be some level of residential placement (e.g., respite care, summer camp, supportive apartment, or group home). As individuals and their families age, residential resources take on increasing importance.
  • A full array of supports and services must be available and maintained. The Arc NY encourages innovative methods for supports and services, which must be proven and well-established prior to replacing existing services.
  • The support necessary for the individual should be determined by the individual and the family when appropriate and not in conflict with the individual’s wishes.
  • Families must be provided with sufficient information to make informed decisions and to advocate for services that will best meet the needs of their family member.
  • These supports must assist families in the promotion of inclusion of children and adults with intellectual and other developmental disabilities in every aspect of their life in the community.
  • A community-based support network of interested citizens and family members should be encouraged as part of the community that helps facilitate access to community resources.
  • Advocates for local, state and national policy must be family-centered and reflect the principles and goals of person-centered and self-determination strategies in all of their advocacy efforts
Employment/in /by Arc Ny

People with intellectual and other developmental disabilities can and should be productively employed in their communities. Supports must be provided to assist with making informed choices about opportunities to utilize each person’s talents and skills.

It is The Arc New York’s position that Employment:

  • Is a natural support of the lifelong process of human maturity and self-determination;
  • Includes a full professional assessment of job, technical supports, and social skills development;
  • Includes the opportunity for the person to participate in a comprehensive plan for learning and structuring employment and career exploration;
  • Is natural when it is fully included and supported in community settings;
  • Is successful when individualized supports include appropriate transportation, travel training, job coaching, service coordination, child care and necessary technology sufficiently adapted to accommodate the each person’s needs throughout their lifetime;
  • Is developed through knowledgeable partnerships with education, business and government to provide meaningful training opportunities from school-age through adulthood in a variety of work settings with natural supports;
  • Is responsive to person-centered choice and goals when a full range of options are offered, including internships, a full range of fully included and inclusionary supported environments, competitive employment, volunteer positions, agency-owned businesses and micro-enterprises (self-owned businesses);
  • Recognizes each person’s contributions and value with compensation which reflects a market-driven wage for the work;
  • Be responsive to individual choice and goals when the options include continued and ongoing exploration, educational opportunities and new work situations to encourage career development
Education/in /by Arc Ny

The most significant law pertaining to education for students with disabilities is the Individuals with Disabilities Education Act (IDEA) which requires a free appropriate public education (FAPE), appropriate evaluation, an individualized education plan, least restrictive environment, parent participation, and procedural safeguards.

Students and children with intellectual and other developmental disabilities must be educated with appropriate supports and services in the least restrictive environment with free and appropriate services, which address their individual needs. However, these educational institutions have historically and inequitably been underfunded, which has caused teachers to be underpaid for their contributions and making it difficult to retain these valuable and critical educators.

Education is a life-long process for people with intellectual and other developmental disabilities (I/DD). Educational systems and programs must value all students and their families and include them in all aspects of education. Students with I/DD face significant additional challenges including baseline study skills, ability to self-advocate, and inadequate academic preparation due to lacking financial support for teachers and specialized educational institutions. The following guiding principles will significantly and positively enhance the education of individuals with intellectual and other developmental disabilities as well as all other individuals.

It is The Arc New York’s position that:

  • The legal rights of students with intellectual and other developmental disabilities are protected and enhanced when educational systems comply fully with the spirit and intent of the IDEA and State Education Department regulations;
  • Students with intellectual and other developmental disabilities must be educated with appropriate supports and services in the least restrictive environment;
  • State and federal governments must conduct effective monitoring of IDEA. Technical assistance and, when necessary, sanctions are used by federal and state governments to ensure compliance by state and local education agencies;
  • Appropriate resources must be made available so that with proper supports students with intellectual and other developmental disabilities have the opportunity to be educated in the most person-centered way;
  • Parents and families must be supported as essential partners in the education and transition to adult life of their children;
  • School districts, parents, and families should work together to ensure that we are holding all children with disabilities to high standards and providing access to challenging academic content and achievement standards;
  • Restraints, seclusion and isolation are not acceptable substitutes for positive behavioral supports for students who experience challenging behaviors, partnerships with Behavioral Health support should instead be advocated for the student;
  • Ensure safe school environments, which provide mental health supports and protection against bullying;
  • Assure that school personnel provide timely explanations that are understandable and use functional descriptive language for special education and related services being proposed for the student;
  • Children with intellectual and other developmental disabilities (including Early Intervention 0-3, Preschool 3-5) must be provided, from birth, with free and appropriate services, which address their individual needs in natural and least restrictive environments;
  • The efficacy of preschool intervention to enhance the lives of children with disabilities has been repeatedly confirmed by studies. Preschools are facing a deteriorating situation, threatening preschool closings and systemic collapse. Despite rising costs, preschools have not received funding growth that meets the current need and pays teachers an equal wage with public schools;
  • Special education 853/4410 schools need predictable and consistent growth factors, tuition rate increases, and other fiscal supportto bring reimbursement in line with the cost of operations;
  • The federal government, New York state and county governments must provide adequate and sustainable funding so that New York’s most at-risk children are provided a chance for a life of independence and fulfilment;
  • Individuals with intellectual and other developmental disabilities and their families must have access to advocacy support and services. Families must receive training and guidance from local, regional and statewide advocacy networks to become effective advocates for children within the educational system;
  • Schools and providers must give parents of children in transition (from early intervention to preschool to school age to post-secondary) information and the necessary supports to ensure a timely, seamless transition;
  • There is a significant shortage of certified special education teachers and related personnel such as physical therapists, speech and language therapists, Occupational therapists, classroom aides and assistants. Special education programs must be fully funded by the federal government and New York state to correct these shortages;
  • Students with intellectual and other developmental disabilities and their parents or guardians must be part of the ongoing decision-making process regarding educational placement and programming;
  • The Arc New York Chapters must form strong partnerships with local school systems and other governmental agencies to provide an appropriate person-centered transition to the next phase of life for students who are graduating from special education programs;
  • The general education curriculum must include age-appropriate history, understanding, acceptance and contributions of people with disabilities throughout the K-12 grades;
  • People with intellectual and other developmental disabilities have a right to lifelong learning including academic and personal enrichment classes
  • As adults, people should be encouraged to pursue educational and vocational opportunities including, but not limited to:
    • post-secondary programs;
    • non-credit and for-credit courses online;
    • fully integrated competitive or other employment;
  • Individuals who choose these educational options have a right to appropriate supports
Early Intervention/in /by Arc Ny

Early childhood, including the prenatal period, is a critical time for brain and organ development. Early intervention identifies and provides effective early support to young children who are at risk of poor outcomes. Effective early intervention works to address diagnoses of IDD and implement evidence-based interventions as appropriate. Early interventions not only give children the best start possible, but also the best chance of developing to their full potential. Intervention is likely to be more effective when it is provided earlier in life rather than later. Though intellectual and development disabilities are lifelong, children can still make progress and thrive.

Education, research and advocacy reduces the incidence and limits the consequences of intellectual and other developmental disabilities. Every person has the right to grow and develop in nurturing environments that are free from abuse and neglect, free from disease and safe from injury regardless of their social or economic status.

It is The Arc New York’s position that:

  • Prenatal, perinatal and postnatal care, including frequent physical/developmental checks and adequate nutrition, as well as available and accessible support services, including genetic testing and counseling to high-risk populations;
  • Education on the risks of exposing the fetus to X-rays, smoking, alcohol and drugs, prescription and non-prescription medications, and sexually transmissible diseases;
  • Immunization against contagious diseases prior to pregnancy;
  • Access to primary medical, dental and mental health services during pregnancy;
  • Access to services for all infants and toddlers who need help, regardless of family income. Services should not be denied to a child just because his or her family is not able to pay for them;
  • A concerted effort to provide services in home and community environments to the maximum extent possible for the child;
  • Mandatory newborn screening programs done within a time frame that guarantees accurate results and treatment for metabolic disorders such as phenylketonuria, galactosemia and hypothyroidism;
  • Advocating for public policies that improve public health and foster education, research and advocacy, reducing the incidence and limits the consequences of intellectual and other developmental disabilities;
  • The prevention of childhood injuries resulting in intellectual and other developmental disabilities, including mandatory use of seat belts, safety seats and helmets;
  • Removal of contaminants, which are known contributors to intellectual and other developmental disabilities;
  • Enforcement of existing public policy designed to prevent intellectual and other developmental disabilities;
  • Recognition of the importance of prevention and the responsibility to take a proactive role in educating the public about the known causes of intellectual and other developmental disabilities and ways in which they may be prevented;
  • Advocacy to ensure that families in which one or both parents have an intellectual and other developmental disability receive all of the supports and services necessary;
  • Infants and toddlers, birth through age three years, must have access to early intervention services administered and funded through the NYS Department of Health, for evaluation, eligibility determination, and if found eligible, appropriate intervention services to improve child and family development.
Diversity, Equity and Inclusion/in /by Arc Ny

Our mission to provide supports and advocate in every manner possible for people who have intellectual and other developmental disabilities is best fulfilled when we embrace diversity, equity and inclusion as a value and a practice throughout The Arc New York. The value of diversity, equity and inclusion extends beyond the people we support to their families, our employees, our leadership, our management and our governing bodies. The Arc New York will make it part of its mission to take appropriate measures and actions to move positively towards achieving diversity, equity and inclusion in all that we are and do.

It is The Arc New York’s position that:

  • We must foster a diverse, equitable and inclusive environment that is responsive to the interests, and needs of the diversity of people who reside in New York. This may include but is not limited to race, ethnicity, national origin, religion, age, marital status, sexual orientation, gender identity and expression, disability, language spoken or method of communication;
  • No person should be defined by a single attribute or characteristic, but rather by the sum or combination/ intersection of their unique qualities and life experiences;
  • Every effort will be made to incorporate culturally and linguistically competent policies, structures, and practices in all components of the organization (e.g. supports, programs, operational structure, leadership, staff, and governance);
  • Individualized supports require the capacity to respond to cultural diversity. This may include but is not limited to race, ethnicity, national origin, religion, age, marital status, sexual orientation, gender identity and expression, disability, language spoken or method of communication;
  • Culturally and linguistically competent (the ability to understand difference across cultures and languages) approaches, procedures, and assessments are used to determine supports and services;
  • We respect, value, and celebrate the unique attributes, characteristics, backgrounds and perspectives of all our members and recognize that historically marginalized viewpoints enrich the entire organization;
  • We are committed to expand the cultural competence of leadership and staff with regard to difference in cultures, languages, and other methods of communication.
Direct Support Professionals/in /by Arc Ny

A stable workforce of caring, competent, creative, well-compensated, and qualified Direct Support Professionals is essential to providing safe, high quality and effective supports and services for people with intellectual and other developmental disabilities. Simply stated, DSPs are incredibly talented professionals who form the foundation of all The Arc New York provides. We cannot do what we do without them.

Provider agencies have consistently high vacancy rates for direct care staff. In addition, the National Core Indicators showed that Direct Support Professionals have a high turnover rate. Without a robust and stable workforce we are not able to consistently meet the high standards that people receiving services in our care
deserve.

A lack of sound data compounds the problem. Federal agencies use data collected through the Bureau of Labor Statistics Standard Occupational Classification system to analyze workforce trends, but this system does not provide an accurate picture of current Direct Support Professional workforce challenges. This system classifies Direct Support Professionals under the broader category of “home health care aide,” which includes all home health care occupations. As a result, it is impossible to accurately track and report workforce trends for Direct Support Professionals, often resulting in the underreporting of workforce needs and regional workforce shortages.

It is The Arc New York’s position that:

  • A living wage and benefits sufficient for economic security are vital in order to attract and retain a qualified workforce to fully support people with intellectual and other developmental disabilities;
  • All Direct Support Professionals (DSP) deserve competitive pay and equivalent pay for the same work across the industry;
  • New York State Department of Labor (DOL) and the federal Bureau of Labor Statistics (BLS)must revise the Standard Occupational Classification system to establish a separate code for Direct Support Professionals, ensuring better data on these pressing workforce challenges;
  • Relevant funding sources must support provider agencies in delivering high quality, certificate-based training which covers the essential knowledge, ethical principles and practices, and skills necessary for effective direct care support;
  • Training must ensure that Direct Support Professionals be educated in the philosophy and values that persons with intellectual and other developmental disabilities are members of the community and should have every opportunity for choice and control over their lives;
  • Providers must foster the professional and personal development of Direct Support Professionals by providing access to continuing education, training, genuine career road maps, and professional advancement opportunities;
  • Continuation, expansion, and funding of professional certification programs must be supported and funded by local, state, and federal policymakers and agencies;
  • National, state and local private and public entities must engage in policy initiatives that facilitate employment placement and offer financial supports as needed to increase the number of people employed in direct support work;
  • Implement a statewide BOCES High School Program to introduce the direct support profession to new potential workforce candidates as has been done for Nurse Assistants, Home Health Aides and Personal Care Aides;
  • Strong regional relationships with 2 and 4-year colleges and universities, BOCES, high schools and civic association agencies should be cultivated to develop a solid pipeline for DSP recruitment and professional development;
  • Staff assignments of Direct Support Professionals must be thoroughly evaluated in order to minimize unnecessary transfers and prevent the resulting disruption of the continuity of service to persons with intellectual and other developmental disabilities;
  • A work environment must be provided that will foster optimum employee satisfaction;
  • We monitor factors contributing to DSPs’ working environment including availability in their communities of public transportation, child and elder care, health care, and affordable housing;
  • We maintain awareness of competitive forces in the labor market, including trends in employee benefits (e.g., sick time, personal time off, healthcare and retirement) and minimum wage.