Resources

Triangle Down Syndrome Network (TDSN) exists to support and connect families of children with Down syndrome by organizing and promoting activities. TDSN is striving to make a presence in the community. We want to ensure all people with Down syndrome have happy and productive lives. Located in central North Carolina, serving families in Wake, Durham and Orange and surrounding counties.

Easter Seals UCP serves a broad range of people with disabilities, such as people with cerebral palsy, autism, spina bifida, intellectual disabilities, muscular dystrophy, stroke, spinal cord injuries, head injuries, hearing and visual impairments and mental health diagnoses.

Autism Society of North Carolina (ASNC) works to directly improve the lives of individuals and families affected by autism. ASNC is service driven, focusing on advocacy, education, and providing direct services to real people facing real challenges. ASNC is a local organization, supporting North Carolinians affected by autism. Every dollar that is raised stays within North Carolina, helping people who live and work in our local communities.

Disability.gov is an award-winning federal government website that provides an interactive, community-driven information network of disability-related programs, services, laws and benefits. Through the site, Americans with disabilities, their families, Veterans, educators, employers and many others are connected to thousands of resources from federal, state and local government agencies, educational institutions and non-profit organizations. New resources are added daily across 10 main subject areas – benefits, civil rights, community life, education, emergency preparedness, employment, health, housing, technology and transportation.

Definitions & Commonly Used Terms

Autism

A developmental disability significantly affecting verbal and non-verbal communication and social interaction, generally evident before age three. Characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences. Autism is a spectrum disorder, which means that there are variations in severity and symptoms for each individual. Diagnoses within the spectrum include: Asperger Syndrome, Rhett syndrome, Fragile X syndrome, and pervasive developmental disorder not otherwise specified (PDD-NOS).

Brain Injury

Traumatic — Traumatic brain injury is damage to the brain as the result of an injury. Traumatic brain injury usually results from a violent blow or jolt to the head that causes the brain to collide with the inside of the skull. An object penetrating the skull, such as a bullet or shattered piece of skull, also can cause traumatic brain injury. Mild traumatic brain injury may cause temporary dysfunction of brain cells. More serious traumatic brain injury can result in bruising, torn tissues, bleeding and other physical damage to the brain that can result in long-term complications or death. (Mayo Clinic).

Acquired — Brain injuries that have occurred after birth such as those caused by strokes and other vascular incidents, tumors, infectious diseases, hypoxia, metabolic disorders (e.g., liver and kidney diseases or diabetic coma), and toxic products taken into the body through inhalation or ingestion. (National Center on Physical Activity and Disability (NCPAD)

Cerebral Palsy

Cerebral palsy is a term used to describe a group of chronic conditions affecting body movements and muscle coordination. It is caused by damage to one or more specific areas of the brain, usually occurring during fetal development or infancy. It also can occur before, during or shortly following birth. Cerebral palsy is characterized by an inability to fully control motor function, particularly muscle control and coordination. Depending on which areas of the brain have been damaged, people with cerebral palsy may experience one or more of the following:

• Muscle tightness or spasm
• Involuntary movement
• Disturbance in gait and mobility
• Abnormal sensation and perception
• Impairment of sight, hearing or speech
• Seizures

(www.about-cerebral-palsy.org)

Down Syndrome

A common chromosome disorder due to an extra chromosome number 21 (trisomy 21). Down syndrome causes mental retardation, a characteristic face, and multiple malformations. Down syndrome is a relatively common birth defect. The chromosome abnormality affects both the physical and intellectual development of the individual. The intellectual handicaps in Down syndrome are often the most important problem. These handicaps may not be evident in early infancy. However, they tend to become increasingly noticeable later in infancy and during childhood as developmental delay. In adults with Down syndrome, the intellectual handicap is manifest as mental retardation. Very few adults with Down syndrome can lead independent lives because of their mental retardation. (www.MedicineNet.com)

Early Intervention

Special education and related services provided to children under age five that are designed to identify and treat developmental disabilities as early as possible in order to prevent more serious disability, ensure the maximum growth and development of each child, and assist families as they raise a developmentally disabled child. (www.Education.com)

Inclusion

Inclusion is an attitude and approach that seeks to ensure that every person, regardless of ability or background, can meaningfully participate in all aspects of life. Inclusion means offering the same opportunities for people with and without disabilities. Inclusion is an approach, not a program. Inclusion is:

• Welcoming everyone
• Building community
• Emphasizing cooperation
• Seeking to understand and accommodate differences
• Providing a safe and socially comfortable environment for all
• Teaching respect, understanding and dignity to people of all abilities
• Embracing changes that facilitate full participation
• Actively reaching out to people who are traditionally excluded or marginalized
• Fostering a sense of belonging to community as a respected and valued peer
• Honoring the intrinsic value of each person’s life

(www.Includingallkids.org)

Intellectual/Developmental Disability

Intellectual disability is a below-average cognitive ability with three (3) characteristics:

• Intelligent quotient (or I.Q.) is between 70-75 or below
• Significant limitations in adaptive behaviors (the ability to adapt and carry on everyday life activities such as self-care, socializing, communicating, etc.)
• The onset of the disability occurs before age 18.

Intelligence refers to general mental capability and involves the ability to reason, plan, solve problems, think abstractly, comprehend complex ideas, learn quickly, and learn from experience. There are many causes of intellectual disabilities, factors include physical, genetic and/or social. The most common syndromes associated with intellectual disabilities are autism, Down syndrome, Fragile X syndrome and Fetal Alcohol Spectrum Disorder (FASD). Common causes occur from genetic conditions (Down syndrome and Fragile X syndrome are examples), problems during pregnancy (a pregnancy of the mother who drinks alcohol while pregnant can result in FASD), problems at the time of birth, health problems such as whooping cough, measles or meningitis and exposure to environmental toxins like lead or mercury. The impact of having an intellectual disability varies considerably, just as the range of abilities varies considerably among all people. (The ARC)

Occupational Therapy

A therapy or treatment provided by an occupational therapist that helps an individual’s developmental or physical skills that will aid in daily living; it focuses on the use of hands and fingers, on coordination of movement, on self-help skills, such as dressing and eating, and sensory and perceptual-motor integration; it also includes the design and adaptation of materials, equipment, and environment. (Riley Child Development Center)

Person-Centered Plan

A Person-Centered Plan (PCP) is based on comprehensive information about a person, starting with personally expressed goals. The PCP attempts to empower the person towards self-directed goals that build on strengths and aspirations, not weaknesses or deficits. The support team, consisting of family members, friends, co-workers, and service providers, assists the person by discovering capacities, exploring change, generating strategies, and making commitments. The heart of the PCP is usually an action plan, which is written statement of the resources and supports that the person has available to achieve future plans. (Idaho Autism)

Segregated settings

Any setting (including classrooms, workplaces, and other locations) that separates people with disabilities from people without disabilities. Examples of segregated settings include classrooms that include only children with disabilities; sheltered workshops in which adults with disabilities work for sub-minimum wages and work only with others with disabilities; and recreational activities for people with special needs that are not open to people without disabilities.

Speech/Language Therapy

A planned program to improve and correct speech and/or language or communication problems; communication therapy. (Riley Child Development Center)

Supported Employment Services

The provision of support to participants who, because of their disabilities, need intensive on-going support to obtain and maintain competitive employment in an integrated work setting that includes employees without disabilities. Supported employment services are individualized and may include any combination of the following services: vocational/job-related discovery or assessment, person-centered employment planning, job development, negotiation with prospective employers, job analysis, training and systematic instruction, job coaching, benefits management, and career advancement services.

Disability Rights North Carolina is an independent, private not for profit organization. Designated by the Governor on July 1, 2007 to ensure the rights of all state citizens with disabilities through individual advocacy and system change, Disability Rights NC (formerly Carolina Legal Assistance) is part of a national system of federally mandated independent disability agencies. While we receive federal money, Disability Rights NC is completely independent of state government. We are also independent from the disability service system in order to be free of any conflicts of interests, which would undermine our capacity to advocate vigorously on behalf of the human and legal rights of people with disabilities.

Read the report that’s sparking a national debate!

National Disability Rights Network is the nonprofit membership organization for the federally mandated Protection and Advocacy (P&A) Systems and Client Assistance Programs (CAP). Collectively, the P&A/CAP network is the largest provider of legally based advocacy services to people with disabilities in the United States.

NDRN members investigate reports of abuse andneglect, and seek systemic change to prevent further incidents; advocate for basic rights; and ensure accountability in health care, education, employment, housing, transportation, and within the juvenile and criminal justice systems for individuals with disabilities.