Technology and Independence for People with Disabilities: Benefits and Myths

With the right community support and resources, all New Jersey residents with intellectual and developmental disabilities can lead full and engaged lives alongside their neighbors, coworkers, classmates, and friends across the Garden State. Knowledge is power, and the NJCDD is here to give individuals and their families a roadmap to fuller community inclusion…because New Jersey is Our Home Too!

Through the “New Jersey is My Home Too!” campaign, we hope to show that a vibrant and inclusive community is possible for everyone, at any age and in every corner of New Jersey.

Below, explore our series of virtual panel discussions, where individuals with developmental disabilities share their experiences and insights as active New Jersey community members:

The NJCDD defines a Cultural Liaison as an individual from a diverse background within the I/DD community who utilizes their own network of community contacts and resources such as family/friends, religious institutions/ faith-based places of worship, school/college/trade school, employment/volunteer, memberships/associations, and leagues/clubs AND connects their network to the NJCDD and other resources for information related to disability services and supports.

Job duties/responsibilities:

• Helps link individuals and families with supportive resources and services through the NJCDD and DD Act Partners
• Supports individuals and families in the community by sharing information and identify linkages using lived experiences
• Assists the NJCDD in connecting with diverse communities and stakeholders and helps identify any barriers in accessing these communities and/or the needed services or information
• Shares knowledge of positive as well as negative experiences in connections with NJCDD and/or accessing or receiving services

In 2022, the National Association of Councils on Developmental Disabilities (NACDD) announced that it was awarded a five-year grant for a national Community of Practice (CoP) grant focused on improving aging services for individuals with intellectual and developmental disabilities (ID/DD), as well as their aging families. The CoP will be made up of 15 States and/or Territories through grants made available by the Administration for Community Living at the United States Department of Health and Human Services.

New Jersey is one of seven grants to States and/or Territories that have been awarded to date.

As health care technology and services have improved, individuals with ID/DD are living longer and healthier lifespans that are close or equal to those individuals without ID/DD, however, evidence has shown that aging programs at both the State and Federal levels have not been prepared to provide suitable services to the ID/DD population.

The Bridging ID/DD and Aging grants bring together State Councils on Developmental Disabilities, State Developmental Disability Agencies, State Aging Agencies, and other State and/or Territory partners through State Alliance Teams (SATs) to give States and/or Territories the opportunity to develop best practices, systems change, policy change, and other types of changes and training that can be replicated across the country that will enhance and improve aging services to individuals with I/DD and their families.

It is the policy of the NJ Council on Developmental Disabilities (NJCDD) to provide timely, meaningful access for individuals with limited English proficiency (LEP) to all programs and activities. All personnel shall provide free language assistance services to LEP individuals whom they encounter or whenever an LEP person requests language assistance services. All personnel will inform members of the public that language assistance services are available free of charge to LEP persons and that the NJCDD will provide these services to them.

 

The purpose of this policy is to establish effective guidelines, consistent with Title VI of the Civil Rights Act of 1964 and Executive Order 13166, for NJCDD personnel to follow when providing services to, or interacting with, individuals who are LEP. Following these guidelines is essential to the success of our mission to assure that individuals with intellectual/developmental disabilities (I/DD) in New Jersey, and their families, participate in the design of and have access to needed community services, individualized supports, and other forms of assistance that promote self-determination, independence, productivity, integration, and inclusion in all facets of life through culturally competent programs. It is also crucial to achieve our vision, that all individuals with I/DD, regardless of language or language proficiency, should be participating, equally-included members of their communities who are able to make real choices and have control over their own lives, have the freedom to strive, excel, and make mistakes, are in a position to achieve personal goals and affect policy and process decisions that affect their lives, and have the same rights, privileges, responsibilities, and opportunities of as any other New Jersey resident.

 

The NJCDD has developed a Language Access Plan to ensure compliance with Title IV of the Civil Rights Act of 1964^[1] and Executive Order 13166^[2], to ensure equity for individuals who are LEP, and to achieve our goal of linguistic competence and responsiveness. The National Center for Cultural Competence defines linguistic competence as “The capacity of an organization and its personnel to communicate effectively, and convey information in a manner that is easily understood by diverse groups including persons of limited English proficiency, those who have low literacy skills or are not literate, individuals with disabilities, and those who are deaf or hard of hearing. Linguistic competence requires organizational and provider capacity to respond effectively to the health and mental health literacy needs of populations served. The organization must have policy, structures, practices, procedures, and dedicated resources to support this capacity.”^[3] NJCDD recognizes that language is a crucial aspect of culture.  Language is the primary vehicle for communicating one’s knowledge, beliefs, attitudes and social expectations. NJCDD defines linguistic responsiveness as supporting the learning, development, understanding, and engagement of people from diverse language backgrounds in the policies, programs and practices of our work in the mode of communication that works best for their participation.

Download the NJCDD Language Access Plan Here

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1 https://www.hhs.gov/civil-rights/for-individuals/special-topics/needy-families/civil-rights-requirements/index.html
2 https://www.lep.gov/executive-order-13166
3 Goode & Jones (modified 2009). National Center for Cultural Competence, Georgetown University Center for Child & Human Development

Click to download: Position Statement on Restraints and Seclusion   |    Declaración de posición sobre restricciones y aislamiento

The New Jersey Council on Developmental Disabilities (NJCDD) endorses the following statement: People with intellectual and/or developmental disabilities have the same basic legal, civil and human rights as all citizens.

Position

The use of physical restraints, seclusion and other aversive techniques have resulted in physical injury, psychological harm, trauma and even death to children and adults with I/DD. The NJCDD believes that the use of physical, mechanical and chemical restraints is inappropriate except in situations of imminent danger of serious physical harm to the individual or others.  NJCDD strongly opposes the inappropriate and/or unnecessary use of restraints and other aversive interventions.  Seclusion should not be used under any circumstances.

It is the further position of the Council that the State, through its applicable agencies, is required to define and prohibit those practices that pose an unacceptable risk of physical, psychological or emotional harm to people with developmental disabilities who reside in State-funded or regulated facilities or who receive State services or public education.

Background Information

The use of physical restraints, seclusion, and other interventions is marked by inequality in power between the person delivering action and the recipient.  Such interventions do not address the cause of the problematic behavior, and may create social isolation and trauma through the application of pain or fear.  The use of such interventions should be replaced by the application of positive behavioral support within a trauma informed environment. This should include a framework of moral and ethical values that focus on:

• Improving quality of life,
• Ensuring individuals with I/DD have the opportunity to be self-determined,
• Recognize behavior as a form of communication,
• Implementing interventions that emphasize the development and use of positive skills for greater independence, and,
• Making modifications to the context in which problem behavior occurs.

Depending upon an individual’s age and state educational/service system, different factors apply:

Students

Students with I/DD are entitled to a free and appropriate public education within the least restrictive environment.  These rights are guaranteed under the Individuals with Disabilities Education Act (IDEA).  “Seclusion refers to involuntarily confining a student alone in a room or area from which he or she cannot physically leave; it does not include a timeout – a behavior management technique that is part of an approved program, involves the monitored separation of (an individual) in a non-locked setting, and is implemented for the purpose of calming.”[1]

The overall use of restraints and seclusion has been reported to disproportionately affect students with disabilities.[2]

Adults

“’Restraint Use’ refers to the restriction of an individual’s freedom of movement either partially or totally by physical contact imposed by staff (Personal Control Technique), the application of a physical device (Mechanical Restraint) or through the use of medication (Chemical Restraint).”  Refer to Division Circular #20.  Restraints are further defined as:

1. Approved: Restraints implemented with prior approval and written order, in accordance with the administrative regulations and policies of the appropriate division, or as part of an approved behavior treatment plan.
2. Unapproved: Restraints implemented without the prior approval/order or not in accordance with the administrative regulations of the Division, or not as part of an approved behavior treatment plan.”[3]

The NJCDD supports Trauma Informed practices, as well as Positive Behavior Interventions and Support (PBIS), an applied science that uses educational methods to expand an individual’s behavior repertoire and systems change methods to redesign an individual’s living environment to first, enhance the individual’s quality of life and second, to minimize his or her problem behavior. The proactive nature of PBS stands in sharp contrast to traditional approaches, which have emphasized the use of aversive procedures that address problem behaviors with reactive, crisis-driven strategies such as restraints[4].

NJCDD supports the proposed federal legislation “Keeping All Students Safe Act” (H.R. 7124, 115^th Congress).

 

Approved May 23, 2019

[1] United States Government Accountability Office (GAO), GAO-19-418T Restraint and Seclusion, February 27, 2019
[2] GAO, K-12 Education: Discipline Disparities for Black Students, Boys, and Students with Disabilities, GAO-18-258, (Washington, D.C.: March 22, 2018)
[3] DIVISION CIRCULAR #14, NJ DEPARTMENT OF HUMAN SERVICES, DIVISION OF DEVELOPMENTAL DISABILITIES 11-1-2007
[4] Positive Behavioral Support: Evolution of an Applied Science, Journal of Positive Behavior Interventions, Volume 4, Number 1, Winter 2002, pages 4-16, 20

Formal Definition

NJCDD defines cultural competence in our members and staff as (a) being aware of each of our cultures, beliefs, values and identities, how these may be different from the individuals and families that we serve, and of the dynamics of difference; (b) valuing this diversity; (c) adapting to the diversity and cultural contexts of the communities we serve and ensuring that our policies and practices respect and reflect cultural beliefs, values and identities; (d) having institutionalized cultural knowledge; and (e) having the capacity for and commitment to conducting organizational self-assessment, institutionalizing its cultural knowledge

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Plain Language

NJCDD defines cultural competence in our members and staff as understanding and respecting cultural differences, beliefs, values, and identities and how these may be different from the individuals and families that we serve.

NJCDD is committed to:
(a) valuing this diversity on an everyday basis;
(b) adjusting our work to include people from diverse backgrounds and cultures with
diverse beliefs and values;
(c) using the history of the organization to make informed decisions; and
(d) checking ourselves to ensure we are doing better.

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Practical Application

Much like diversity, the practice of cultural competence should never be considered achieved. Always start with your user data. That data vs the data from the area as a whole can tell you if you are reaching across cultures. The practice of cultural competence should look like (among other things) regular staff training and diversity within your hiring.

Formal Definition

NJCDD defines diversity as recognition of the uniqueness of individuals. NJCDD will foster and value individuals’ differences. In our decision making and service delivery, NJCDD will have a deeper and more inclusive view of the full range of human experiences in New Jersey’s population.

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Plain Language

NJCDD defines diversity as knowing that everyone is unique and is committed to:

a) encouraging and valuing the differences in each person.
b) including voices from New Jersey’s diverse residents when making decisions.

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Practical Application

Regularly review user demographics watching for trends and anomalies. The practice of diversity should be a constant goal that is never considered achieved. Diversity touches all aspects of an organization. The staff should be reflective of the community they serve. Your office should be in a location easily accessible by public transit. Virtual options for service should be available. User forms should have a place for chosen names to allow transgender individuals to access services without having to constantly “out themselves” or be “deadnamed”. Outreach materials should be created with this goal as well. If an in-office visit is required any waiting area should have materials for children as childcare is far from affordable for a large segment of the population. Representation matters, consider this in any picture models for literature.

Formal Definition

NJCDD recognizes that not everyone has the same access to resources and opportunities. NJCDD will promote that everyone accessing services through our system will be provided with meaningful access to opportunities and resources to address their needs. All Council activities and functions are conducted in a manner that ensures persons with I/DD are provided with different levels of support and assistance depending on need, circumstances, interests, or abilities.

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Plain Language

NJCDD understands that not everyone has the same resources and opportunities and addresses this by:

a) giving information to individuals with I/DD and their families about the services and resources that can help them.
b) offering support that people with I/DD and their families need to participate in our activities

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Practical Application

Regularly review user demographics and programming with a goal of ensuring equal outcomes for all community members. Eg- A rural county with a high percentage of people in poverty might need a disproportionate amount of the budget to ensure things like transportation to the office or virtual meetings are in place. A community with a high immigrant population might need a bigger percentage of bilingual staff members or they might use services like interpreters and or translation language lines more frequently.

Formal Definition

NJCDD defines inclusion as an ongoing practice of implementing behaviors, attitudes, and actions and fosters an organizational culture that allows our employees, members, and constituents across all racial, ethnic, cultural, and identity groups the opportunity to fully participate in every aspect of the organization’s programs and services to the fullest extent possible.

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Plain Language

NJCDD defines inclusion as encouraging and valuing everyone’s contribution by:

a) making constant efforts to welcome and keep people from diverse backgrounds joining in NJCDD activities.
b) offering opportunities and support for the full participation of those from New Jersey’s diverse communities.

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Practical Application

● Regular review of the organizational culture through ongoing self-reflection and active self-assessment to ensure keeping current with demographics of the organization and the individuals served
● Establish a process of soliciting feedback from constituents in a way that they feel heard so ongoing work of inclusion will be incorporated into the work of the Council

Formal Definition

NJCDD recognizes that language is a crucial aspect of culture. Language is the primary way for communicating one’s knowledge, beliefs, attitudes and social expectations. NJCDD defines linguistic responsiveness as supporting the learning, development, understanding, and engagement of people from diverse language backgrounds in the policies, programs and practices of our work in the mode of communication that works best for their participation.

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Plain Language

NJCDD recognizes that language is one of the main ways that we communicate and is an important communication tool.

NJCDD is committed to:
a) supporting people who speak languages other than English to participate in all NJCDD activities through language support and/or assistive technology.

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Practical Application

● Having materials available in languages that are reflective of your area population is helpful, however to be linguistically competent bilingual staff should be utilized whenever possible. At a minimum, all materials given to users should also be reviewed by bilingual staff to ensure there are no phrases within the document that may cause confusion to an English language learner. If a bilingual staff member is not available qualified translators should be utilized to minimize any confusion.
● NJCDD will have a Language Access Plan that continues to be updated based on current data to ensure all constituents are able to fully participate in the Council’s programs and services