What Is Atlantoaxial Instability?

Atlantoaxial instability or AAI describes an increased flexibility between the first and second bones of the neck. Most individuals with Down syndrome have some increased flexibility of joints, called ligamentous laxity, which can affect any of their joints. AAI refers to this condition when it affects the joint between the first and second cervical vertebrae. Since the vertebrae surround and protect the spinal cord, instability of the joint could place the spinal cord at risk for injury.

How Is Atlantoaxial Instability Identified?

Screening for AAI involves an accurate history and physical exam.  The previous recommendations for universal screening cervical spine x-rays have been removed due to the inaccuracy of the x-ray as a general screening tool for asymptomatic people.  Features that could suggest AAI include: new onset of symptoms of change in walking ability, change in the ability to use the arms or hands, change in bowel or bladder control, neck pain, stiff neck, head tilt, pain that radiates down the arms, abnormal muscle reflexes, or weakness.

How Often Does Atlantoaxial Instability Occur?

Only 1-2% of people with Down syndrome develop symptomatic AAI that may require treatment.

What Should Be Done?

If the healthcare provider finds any of the concerning findings for AAI listed above, they will obtain a cervical spine x-rays.  If the x-rays shows any abnormality, they will immediately refer the patient to a neurosurgeon or orthopedic surgeon with expertise in AAI management.  If the symptoms are still concerning, even with normal x-rays, a prompt referral will be made to the surgeons.

How Can Symptomatic AAI Risks Be Reduced?

Parents should be advised that participation in some sports, including contact sports such as football and soccer and gymnastics (usually at older ages), places children at increased risk of spinal cord injury.  Trampoline use should be avoided by all children with or without Down syndrome younger than 6 years and by older children unless under direct professional supervision.

REFERENCE:
Marilyn J. Bull and the COMMITTEE ON GENETICS.  Clinical Report–Health Supervision for Children With Down Syndrome.  Pediatrics, 2011.  128(2):  393-402.

Please quote fully and reference National Down Syndrome Congress
Prepared for and Approved By: The Professional Advisory Council, National Down Syndrome Congress
Updated January 2017

Can People with Down Syndrome Have Depression?

Persons with Down syndrome are as susceptible as the general population to clinical depression. Depression and other forms of mental ill health approaches a prevalence of ~20% in young adults with Down syndrome.

What are Signs or Symptoms of Depression?

Depression may present differently in persons with Down syndrome. Individuals with Down syndrome may be less likely to verbalize feelings of sadness, guilt or worthlessness due to expressive speech and conceptual limitations. Nevertheless, they can show observable changes in mood and behavior.

• Changes in mood include an increase in irritable mood, lethargy or listlessness.
• Changes in behavior include withdrawal, loss of interest in activities formerly enjoyed, fatigue and lack of energy, changes in eating or sleeping patterns (either less or more), and a potential slow-down in movement and activities.
• Self-talk may also increase or it may occur in more public settings. These changes may be easily interpreted by caregivers once they recognize the behavior as depression.

It is important that signs and/or symptoms of depression be closely assessed to determine if they are symptoms of a biological/medical condition (e.g., sleep apnea, hypothyroidism, seizures or chronic pain).

It is also common for depression to be accompanied by other features which make diagnosis and management more challenging.

• Symptoms of anxiety, repetitive/compulsive behaviors or disorganized thought/speech may also be present.
• Sometimes anger, agitation or acts of aggression are associated with depression or related mood disorders.
• Rarely, individuals with severe depression become mute, very inactive and are unable to perform their self-care as previously established.

Depression may be missed because the family is told that the signs and/or symptoms are “just Down syndrome.” Signs and symptoms might also be misinterpreted as early-onset dementia or Alzheimer’s disease. Typically, the onset of behavioral symptoms suggestive of a dementia does not occur before the age of 40 years in persons with Down syndrome.

Parents or other family members are usually the first people to notice these signs and symptoms. If any signs or symptoms are present, it’s critical to seek early professional assistance.

What Can Cause Depression in Someone with Down Syndrome?

People with Down syndrome appear to be susceptible to depression and related mental health conditions for a variety of reasons including, co-occurring medical conditions, increased vulnerability to physical or emotional stress, prolonged grief or adjustment reaction or social isolation. Neurochemical changes in the brain, caused by trisomy 21 itself and accelerated aging, may also play a role.

A recent history of the person’s life course is necessary in order to define the onset of mental health symptoms, in association with life events and possible medical conditions.  Assessment must be carried out according to the individual’s cognitive/developmental level and history of previous baseline adaptive and behavioral function. Thus, it is critical to interview a knowledgeable caretaker about these issues and strive to create a personal program of in-home and community supports

In Down syndrome, as the person ages, mental function and social support may decrease, creating the opportunity for depression to occur.

• Adults with Down syndrome may experience isolation, changes in residences, and the lacking of social opportunities and adaptive skills. All of these factors can lead to decreased self-esteem, an inability to care for themselves and depression.
• Often, it is the case that adults with Down syndrome lack the opportunities to make their own decisions in areas where they are capable (e.g., social activities, hair style, clothing choice, etc.). They may be treated as children and feel little, control over their daily lives.
• Individuals who care for adults with Down syndrome may over-protect the person, inappropriately take punitive actions or underestimate the need for home/community support systems.

What Can be Done to Prevent and Manage Depression?

Many physicians, psychologists and other mental health professionals have had little training in psychiatric conditions in persons with intellectual disability, leaving room for missed or misdiagnosis. A preventive approach to depression in persons with Down syndrome is desirable.

• Maintaining physical exercise program, meaningful social and leisure activities, healthy diet, and good quality sleep will go a long way toward prevention
• Given the opportunity to take some control over their lives, persons with Down syndrome will experience fewer occasions for depression or other challenging behavior to occur.
• It is important that families and mental health professionals be informed about and sensitive to the early signs of depression in persons with an intellectual disability, so that diagnosis and treatment may begin promptly.

Whenever a mental health diagnosis is made, it is important that the treatment plan be individualized and follow-up be made available. The most comprehensive treatment plans are mindful of the need for caretakers to temporarily adjust their expectations and the willingness to preserve a high quality of life. Some modification to the person’s daily schedule or school/work environment is often required

When medications become necessary, information should be made available concerning specific target symptoms, expected results, possible side effects their management, and the need for bloodwork or other medical monitoring.

Much more research must go into examining depression in persons with Down syndrome. Understanding why a person becomes depressed and alleviating the source(s) is often a challenging endeavor. Successful management and follow-up of depression in persons with Down syndrome can best be accomplished through collaboration between the individual, their family and the mental health and medical communities.

Please quote fully and reference National Down Syndrome Congress.
Prepared for and Approved by the Professional Advisory Council, National Down Syndrome Congress
Reviewed and Revised July 2016

What is the Background?

Historically, students with Down syndrome have spent the majority of their school days segregated from the general education environment. Typically they were automatically placed in the most restrictive setting with no consideration of the general education environment, even though the Individuals with Disabilities Education Act (IDEA) requires such consideration and demonstrates a clear preference for inclusion when it states that a school district may not place a student with disabilities outside of a regular classroom “if educating the child in the regular classroom, with supplementary aids and support services, can be achieved satisfactorily.”

In recent years, however, dramatic changes have occurred. Students with Down syndrome are now experiencing success as members of age-appropriate general education classrooms with appropriate supports in their neighborhood schools.

What Does Inclusion Mean?

There is no standard or official definition of inclusion. However, the National Center on Educational Restructuring and Inclusion (NCERI) has developed the following working definition based upon extensive study of inclusive programs and consultation with educational leaders:

Inclusion is providing to all students, including those with significant disabilities, equitable opportunities to receive effective educational services, with needed supplementary aids and support services, in age-appropriate classes in their neighborhood schools, in order to prepare students for productive lives as full members of society.

What Conditions are Required for Inclusive Education to be Successful?

Implementation of best practice as supported by recent research findings indicates that children with Down syndrome benefit from education in general education classrooms when school districts provide the necessary conditions to yield quality education to teachers, parents, and students.

These include:

• A view of special education as a collection of supports and services delivered to children rather than as a particular place
• Access to the resources and expertise of both general and special education
• Removal of barriers, including funding, that are created by the operation of dual systems both general and special education)
• An attitude which reflects respect toward the student and the family and encourages their meaningful participation as members of the educational planning team
• High expectations for all students, as well as teachers who treat each student as a uniquely important individual
• Individualized Education Plans (IEPs) which are appropriately individualized to meet the unique needs of each student and are written and implemented collaboratively by the planning team, which includes parents as equal partners
• Placement in the neighborhood school classroom to which the student would be assigned if he/she did not have a disability with students of the same age
• Access to the same academic curriculum, with or without adaptations, as students without disabilities
• Proactive use of systematic and positive behavior-support strategies
• Access to assistive technology and the appropriate training to use it
• Facilitation and support for peer relationships and interactions using deliberate strategies
• Careful planning and implementation of transitions from grade to grade, school to school, school to work, and school to higher education
• An emphasis on staff development and training for all educators
• Facilitation of interdependence and natural support networks in both school and community environments
• Creation of a strong sense of community among students, staff, and parents

How Does Inclusion Fit with School Reform Efforts?

The movement toward quality inclusive schooling is fully consistent with current school reform and restructuring efforts and acknowledges the broad diversity of learning needs and styles among all students, with and without disabilities, as well as the critical importance of family involvement in achieving excellence in education. Research shows that inclusive education has a positive impact (both academic and social) on typical students as a result of increased contact and relationships with students with disabilities.

Many of the school reform initiatives, including those described below, are compatible and supportive of best practices in inclusive education:

• Program philosophy which emphasizes the value of diversity, multiculturalism, social inclusion and belonging for everyone
• Access for all students to campuses and classrooms, including co-curricular and extra-curricular activities, that are free from prejudice and other physical and psychological barriers
• Comprehensive, sensible and culturally competent curricula which are effective for the full range of learners
• Thorough analysis of the learning needs of all students
• Broad use of unbiased and culturally sensitive assessment procedures that enhance students’ strengths and assist in the identification of their needs
• Accountability for achievement within the context of statewide performance standards, accommodated as appropriate for personal potential and educational experience

Conclusion

Therefore, the NDSC affirms that quality inclusive education, as defined by the indicators delineated above, should be a readily available and accessible option for every student with Down syndrome.

Please quote fully and reference National Down Syndrome Congress.
January, 1997
Reviewed May, 2005

Individuals with Down syndrome may display behavior that is off-task, non-compliant and interferes with learning, socialization or disrupts on-going activities. For any individual, these challenging behaviors may be occasional events or may represent consistent patterns of performance. There was a time when challenging behavior was treated as if it were undesirable and had to be eliminated. This attitude focused more attention on the effectiveness of a behavior intervention (did it eliminate the challenging behavior?) than on other characteristics of the intervention (was it artificial, stigmatizing, or inappropriate in school or community settings?). There seemed to be an unstated assumption that, for individuals with intellectual disabilities, any intervention was acceptable as long as it worked.

Recently, school and community services for individuals with disabilities have begun to focus on not only behavior management goals, but skill acquisition and lifestyle outcomes. Quality programs now begin by defining a desirable lifestyle for each individual (describing presence and participation in the community, variety of activities, opportunities for choice among an array of valued activities) and then design behavioral and instructional supports necessary to access that lifestyle.

However, as school and community services have moved to include and integrate individuals with disabilities, practitioners have become more sensitive to the social impact of behavior interventions. As society has acknowledged the basic rights of individuals with disabilities, educators, employers and family members have begun to question the appropriateness of some procedures that had become accepted practice. All interventions are not equal. Those that violate individual rights, or are unacceptable to regular education students and community audiences, now merit careful scrutiny.

So-called maladaptive or inappropriate behavior can often serve an important function for an individual with a disability. For individuals who have limited communication skills or who lack a formal communication system, aggressive or non-compliant behavior may be the only means to communicate wants and needs or to exercise some control over the environment. Seeing students as attempting to communicate underscores the importance of teaching acceptable methods of communication as one important way of dealing with challenging behavior.

Any effort to develop guidelines for the use of behavior management techniques is complicated by certain factors. There is tremendous variability across families both in the procedures for discipline and in the standards set for acceptable behavior. What is tolerable behavior in one family may be intolerable in the next. What is an acceptable disciplinary procedure to one family may be unacceptable to another. It may be difficult to offer guidelines for school and community programs when families themselves display such diversity. Despite these difficulties, it seems important to offer guidelines for the use of techniques to support individuals who exhibit challenging behavior. The guidelines are meant to help identify key features and articulate values that are consistent with quality programs for individuals with Down syndrome.

The guidelines are derived from several sources: a) the research literature on behavior management, b) model programs that implement state-of-the-art procedures and deliver effective services for people with disabilities, and c) values about the rights of individuals with disabilities and their place in society. The intent is to guide the design of services, not to condemn or condone any particular practice.

Behavior Management Guidelines:

1 – Any Behavior Management Program Should be Based on a Functional Analysis of the Challenging Behavior

The origin of challenging behavior is not the person with a disability but in the interaction of the person and the environment. The style or manner of making requests can elicit from the person with Down syndrome tremendous cooperation or resistance. For students, behavior challenges may, in fact, reflect curriculum problems. Students who are confronted with learning tasks that are meaningless or that are the same day after day, may exhibit challenging behaviors to escape the boredom of the instructional setting. Likewise, students who repeatedly face tasks that are too demanding or lessons that fail to provide the support necessary for actual learning, are likely to develop behaviors that allow them to escape such aversive situations. Similarly, a worker who is assigned jobs that are either too difficult or insufficiently challenging may display inappropriate behavior to communicate his or her dissatisfaction.

Challenging behavior may result from poor classroom or program organization. For example, in group homes where there may be inadequate supervision, extended periods of unstructured activity, or poorly defined transitions between activities, there may be a high probability that residents will display challenging behaviors.

Behavior, whether or not it is socially acceptable, frequently serves to communicate wants, needs, or preferences. This is especially true for individuals who may not have an effective system of verbal communication. A program to eliminate “bad behavior” may in fact eliminate a person’s only means of expressing a preference.

Functional analysis — systematic observation to determine the function served by challenging behavior, the consequences that maintain it, and the circumstances that occasion it — should be an ongoing process. Once is not enough.

The same stressors that may disrupt the behavior of people without disability (medical illness, pain, fatigue, exhaustion, disruptions of routine, divorce, death of a family member or other personal loss, environmental overstimulation or excessive chaos), may also lead to the display of challenging behavior by people with disabilities. Teachers, supervisors, and employers should make a reasonable effort to understand the person with a disability before identifying a “behavior problem.” For these reasons it is also best practice to consult with a medical provider experienced in the evaluation of behavior in individuals with Down syndrome or intellectual disability.

2 – Programs Should Focus on Developing Competence Rather than Compliance

The management of challenging behavior cannot occur in isolation. There is no clear line between an individual’s “behavior plan” and the other aspects of his or her life, where someone lives or works, the tasks he or she confronts on a daily basis, and opportunities for choice and control can all affect challenging behavior. All behavior plans should be part of a larger, comprehensive plan of support and development.

The goals behind any behavior programs should be to increase appropriate behavior rather than simply decrease inappropriate behavior. Programs which focus exclusively on reducing inappropriate behavior teach what not to do, not what to do.

The presence of a challenging behavior is not an excuse for the lack of positive programming. The more inappropriate behavior and individual displays, the more important it is that he or she be taught effective and appropriate ways of interacting with the environment.

Providing effective training and an organized environment are powerful strategies for managing behavior. When individuals are actively engaged in instructional activities of an appropriate level of difficulty and when the operating rules of the program are clear and consistently applied, the probability of challenging behavior is significantly reduced.

The primary strategy for dealing with challenging behavior should be positive approaches that emphasize developing adaptive and socially acceptable replacement behaviors.

Personal safety for both the individual and those around them is another important principle to be upheld, and must remain high on the list of program goals.

3 – Any Intervention Procedure Should be Consistent with the Long-Term Goals of Community Integration

Since the ultimate goal for students with Down syndrome is that they live, work, and play in integrated community settings, any behavioral intervention should be acceptable to and feasible in those settings. For example, if a procedure cannot be used in a regular educational setting, its use in a special education classroom is suspect.

The goal of an intervention should be to increase participation in, not remove individuals from, integrated settings and activities with peers without disabilities. Integration is as important to behavior management as it is to services in general. For example, participation in an integrated school program ensures that students will have models for appropriate behavior and that teachers have a clear reference for what amount of deviance is, in fact, age appropriate.

The standards established for appropriate behavior should reflect the standards of the natural environment. Individuals with Down syndrome should not be expected to comply or remain on task 100% of the time. Most people without disabilities would be identified as having behavior problems if held to such criterion.

Programs should emphasize the use of natural consequences for behavior rather than employ elaborate or artificial reinforcers. Developing programs that rely on natural consequences increases the probability that behavior change can be maintained by the natural environment.

4 – A Behavior Management Program Should Build Toward Self-Monitoring and Self-Management

From the onset, the goal of a behavior intervention should be for the person to learn to manage his or her own behavior whenever possible. Training an individual to monitor and evaluate his or her performance is as important as reducing the challenging behavior.

The expectations and consequences of a behavior management program should be clear and should be communicated to the person whose behavior is being addressed.

5 – Parents or Guardians and Persons with Down Syndrome Themselves Should Have the Opportunity to be Involved in All Decisions About Behavior Management Programs, and in the Design and Implementation of Agreed-Upon Procedures

Issues of motivation and behavior management should be addressed in a student’s individualized education program (IEP) or an adult’s individualized program plan. Parents are key members of the team that develops those plans. There should be agreement about both the goals and methods of dealing with challenging behavior.

Family involvement is critical to consistent implementation of any behavior program. Procedures to change behavior will be most effective when the same strategies can be used by individuals in the home as well as by those at school or work.

Replacing challenging behavior with socially acceptable alternatives will necessitate on-going problem solving by teachers, parents, and others who provide services.

6 – Programs to Manage Challenging Behavior Should be Designed and Implemented to Protect the Rights and Dignity of the Person with a Disability

Procedures designed to reduce inappropriate behavior should not stigmatize, humiliate, or call unnecessary attention to an individual’s disability. The presence of a disability does not confer license for treatment that is disrespectful or dehumanizing.

In general, only procedures that would be acceptably used with individuals without disabilities should be employed to manage the behavior or individuals with disabilities. For example, if an intervention would be unacceptable for use with students without disabilities, it would be difficult to justify its use with students with disabilities.
The complexity and intrusiveness of an intervention should be balanced with the benefit that will accrue to the individual. The least intrusive intervention should be presumed to be the most appropriate one.

Procedures that are intrusive or aversive to the person, or discomforting to the teacher, employer or onlookers, should be used in limited and controlled conditions. There should be:

• Documentation that the program uses a functional curriculum and employs effective procedures to deliver training and support
• A comprehensive functional analysis to ensure that the intervention has a reasonable probability of success
• A review process to ensure informed parent consent and to verify that the nature of the challenging behavior justifies an extraordinary intervention
• A commitment to use the procedure only on a short-term basis
• Simultaneous use of positive procedures to build appropriate behavior
• Careful monitoring of both the person’s and the trainer’s behavior
• Procedures that are intrusive or are aversive should never substitute for positive programming.

There are procedures for dealing with challenging behaviors that may be effective in reducing behaviors but which fail to meet other important criteria. The National Down Syndrome Congress does not support the use of procedures which:

• Involve the delivery of pain
• Result in tissue damage to the individual with a disability
• Violate local standards of dignity and respect

The NDSC encourages educational, employment, residential, and recreation services to adopt procedures for managing challenging behavior that:

• Acknowledge the role of environmental variables in developing and maintaining behavior
• Respect the dignity of the individual with a disability
• Develop and support competent performance in integrated environments.

Please quote fully and reference the National Down Syndrome Congress
Prepared for and Approved By: The Professional Advisory Council, National Down Syndrome Congress
Reviewed and Revised July 2016

As in all children, appropriate nutrition is crucial for the growth and development of children with Down syndrome.  This nutrition is best obtained by eating a balanced and healthy diet.  However, since the 1940s, there have been numerous proposed therapies to “enhance” the nutritional intake for children with Down syndrome.  These therapies include vitamin, mineral, amino acid, enzyme, and hormonal therapies, including thyroid replacement in the absence of verified thyroid dysfunction.  While many of the products are marketed as having a scientific background for their proposed mechanism of action, these mechanisms are largely unproven.  There have been no quality medical studies to date that have shown reproducible clinical benefit for these products.  Additionally, as these products are not marketed as medical therapies, they are not regulated by a governing body like the U.S. Food and Drug Administration.  As such, the exact components in each supplement and their safety are not scientifically verifiable.  The potential short and long term side effects are unknown without these scientific analyses.  Therefore, the National Down Syndrome Congress does not currently endorse or recommend these types of supplemental nutritional therapies for people with Down syndrome.

This position statement does not include verified nutritional deficiencies that require medical treatment based on the evaluations of an individual’s primary care provider.

REFERENCES

1. Sacks, B., Buckley, F. “Multi-Nutrient Formula and Other Substances as Therapies for Down Syndrome: An Overview.”  Down Syndrome News and Update, 1998.  1(2): 70-83.
2. Salman MS. “Systematic review of the effect of therapeutic dietary supplements and drugs on cognitive function in subjects with Down syndrome.”  Eur J Paediatr Neurol, 2002. 6: 213-219.
3. Roizen, N.  “Complementary and Alternative Therapies for Down Syndrome.”  Mental Retardation and Developmental Disabilities Research Reviews, 2005.  11: 149-155.

Please quote fully and reference the National Down Syndrome Congress.
Prepared for and Approved By: The Professional Advisory Council, 
National Down Syndrome Congress
Updated July 2016

There are different types of prenatal testing that can be done to evaluate the chance of a fetus having Down syndrome or determine the diagnosis of Down syndrome.

A screening test establishes the chance of a fetus having Down syndrome. It does not provide a definite diagnosis. A diagnostic test studies the chromosomes from the fetus. If there are three copies (trisomy) of chromosome 21, then the fetus has Down syndrome.

The American College of Obstetricians & Gynecologists (ACOG) has released a position statement to help guide prenatal practices on the indications for use of non-invasive prenatal screening (NIPS). NIPS should only be offered to high-risk women as defined by (1) maternal age 35 years or older at delivery, (2) fetal ultrasound findings indicative of possible aneuploidy, (3) previous history of prior pregnancy with trisomy, (4) known familial Robertsonian translocation, or a (5) previous positive prenatal screen. They also recommend NIPS testing only be given in context with pretest and posttest genetic counseling. Further, the American College of Medical Genetics (ACMG) recently recommended that the term non-invasive prenatal testing (NIPT) be replaced by noninvasive prenatal screening (NIPS) as NIPT is not a diagnostic test and positive screening results should be confirmed by an invasive diagnostic procedure.

NDSC Recommendations

• Improve the regulation of informed consent and disclosure of information regarding pre-natal screening and diagnostic testing for all women
• Enhance training about Down syndrome for genetic counselors, obstetricians, pediatricians and students in training.
• Educate and support pregnant women and couples with a positive screen or diagnosis for trisomy 21

Please quote fully and reference National Down Syndrome Congress
Prepared for and Approved By: The Professional Advisory Council, National Down Syndrome Congress
Updated July 2016

The self-determination movement makes it possible for people with Down syndrome to have greater control over all aspects of their lives.  Self-determination is built on the core principles of freedom, authority, support and responsibility for all people with disabilities.

Freedom

• The exercise of the same rights as all citizens: to establish where they want to live, with whom, and how they will use their time.

Authority
The control over sums of money needed for one’s support: development of an individual budget that “moves” with the person.

Support
The organization of these resources as determined by the person with Down syndrome and his or her allies and the contracting for specific tasks for which one needs assistance.

Responsibility
The wise use of public dollars, including the obligation of people with Down syndrome to contribute to their communities in meaningful ways.

People with Down syndrome have the right to:

• Be treated as individuals
• Not to be discriminated against at work or in the community
• Make informed choices about their lives including where to live, with whom to socialize and live, and where to work
• Have opportunities for socialization within the community
• Have the necessary support to enable them to make responsible choices
• Speak and be listened to
• Have access to community services and education
• Have privacy to spend time as they wish
• Be safe
• Grow into responsible adults.

While opportunities and services for people with Down syndrome have continued to expand, this often occurs within the context of a service agency, group living or school environment. The existing “systems” need to focus on changes that enable people with Down syndrome to be fully included in the life of the community. This can only occur through inclusion and self-determination.

Please quote fully and reference National Down Syndrome Congress
Prepared for and Approved By: The Professional Advisory Council, National Down Syndrome Congress
Reviewed 2010

The National Down Syndrome Congress (NDSC) believes that employment should be an expected life activity for individuals with Down syndrome, and that individuals with Down syndrome should have the individual and systemic supports necessary to enable them to find, keep and succeed in careers in the community based on their preferences, interests, and strengths. We are committed to advancing policies that:

• Empower individuals with Down syndrome to make informed choices about their work and careers by providing individualized exploration of and experiences with inclusive, community-based employment and by presenting all information needed to make informed choices in an understandable way;
• Build infrastructure and transition supports needed to phase out the issuance of subminimum wage certificates while increasing opportunities for competitive, meaningful, integrated employment and putting in place safeguards to protect the interests of any people affected by this shift;
• Increase employment opportunities in integrated, meaningful, community-based settings that contain the proportion of disabled people in the general population, pay all employees at least the minimum wage in their state, and offer benefits commensurate with their positions;
• Provide sufficient financial, personnel and other resources including training opportunities to support inclusive meaningful, employment opportunities in the community and be flexible enough to foster collaboration and braiding of employment-related funds;
• Increase access to and capacity of supported and customized employment services funded through Medicaid and other mechanisms;
• Promote the Employment First framework, as defined by the Department of Labor, to align policies, service delivery practices, and reimbursement structures to commit to integrated employment as the priority option with respect to use of publicly-financed day and employment services for youth and adults with significant disabilities;
• Encourage and incentivize businesses to improve hiring practices and/or reward retention of employees with Down syndrome and other disabilities;
• Increase opportunities for apprenticeship and work-based learning experiences by facilitating the coordination of school-to-work transition programs, higher education, and community-based employers;
• Minimize transportation barriers to employment;
• Facilitate opportunities for self-employment and business ownership;
• Provide individuals with Down syndrome and other disabilities ongoing opportunities for and information about job advancement, career development, benefits and retirement;
• Provide training in best practices to staff of employment and school-to-work transition programs to help individuals with disabilities find and keep jobs, receive on-the-job training and guidance in acquiring workplace social skills; and
• Allow for an environment of “continued attachment” for individuals who have successfully achieved partial self-sufficiency but require continued public assistance to offset the tremendous costs of certain long term supports related to their disability.

Please quote fully and reference National Down Syndrome Congress.
Prepared for and Approved by the Public Policy Advisory Council, National Down Syndrome Congress
Reviewed and Revised November 2018
View Position Statement as a PDF

The National Down Syndrome Congress (NDSC) believes that all students, including those with Down syndrome, have the right to an education designed to help them make progress in the general education curriculum for the grade in which they are enrolled, should have an opportunity to meet the requirements for a regular high school diploma, and should be prepared to pursue postsecondary education and/or competitive integrated employment. In addition, except in rare circumstances, students with Down syndrome should be educated in the general education classroom, with appropriate services, supplementary aids and supports, in the school the student would’ve attended if not for the disability. Alternative placements should be considered only when education in the general education classroom cannot be satisfactorily achieved because of a specific issue related to the child’s disability and not because the system is failing to provide the services, supplementary aids and supports needed for a free, appropriate public education.  Decades of research demonstrate that students with disabilities and their peers benefit academically and socially and have improved long-term outcomes when educated using inclusive best practices.[1]

NDSC recognizes that parents and self-advocates can and do make a variety of decisions about educational placements based upon individual needs. However, we also recognize that those who are seeking an education in the general education classroom face significant systemic obstacles. (Recent studies demonstrate that only 17% of students in the intellectual disability category under the Individuals with Disabilities Education Act (IDEA) and 3% of students who are taking state alternate assessments are being educated 80% or more of the day in the general education classroom.)[2] Therefore, NDSC must work to promote policies that support inclusive education opportunities for students with Down syndrome, including the Least Restrictive Environment provisions in IDEA that consider the general education classroom as the presumed placement unless it is determined that a particular student cannot be educated satisfactorily in that environment even with supplementary aids and services.

[1] The Segregation of Students with Disabilities, Chapters 5 and 6, National Council on Disability

[2] Where Students with the Most Significant Cognitive Disabilities Are Taught Implications for General Curriculum Access, Harold Kleinert, Elizabeth Towles-Reeves, Rachel Quenemoen, Martha Thurlow, Lauren Fluegge, Laura Weseman, Allison Kerbel

NDSC is committed to advancing policies that:

• Recognize all students with Down syndrome as general education students first, who also happen to receive special education services, and therefore must benefit from the high academic expectations for all students expressed in the Every Student Succeeds Act (ESSA), as well as their rights under IDEA (including when public funds are used to educate them in private schools);
• Provide training opportunities for administrators, teachers, and specialized instructional support personnel to have the pre-service preparation and ongoing professional development to implement Positive Behavioral Interventions and Supports and Universal Design for Learning (www.udlcenter.org), and provide the necessary accommodations, modifications and other supports to ensure progress in the grade level general education curriculum alongside nondisabled peers to the maximum extent possible;
• Evaluate students with Down syndrome for – and give them access to any tools and services needed for communicative competence;
• Fully inform self-advocates and their parents as members of the IEP team;
• Align the IEP planning process with the academic and functional goals needed for a life of integration in all aspects of the community: for elementary, secondary and postsecondary education, social life, independent living, and employment for the same wage and opportunities for advancement of any other in that position (competitive integrated employment);
• Prepare students with Down syndrome for self-determination and self-advocacy at as young an age as possible;
• Prevent the use of restraint, seclusion and other aversive interventions that deny people their humanity and rob them of their dignity;
• Enable students with Down syndrome to access extra-curricular activities provided by the school, with supplementary aids and services as needed;
• Prepare students with Down syndrome for inclusive postsecondary education and competitive integrated employment prior to leaving secondary school, with the development of job skills being accomplished through paid apprenticeships, work-based learning opportunities and other integrated job opportunities, for pay if possible;
• Do not preclude students with Down syndrome, including those who participate in alternate assessments, from attempting to meet the requirements of a regular high school diploma;
• Enable students with Down syndrome to receive a meaningful exit credential if they do not earn a regular diploma;
• Promote the development of and funding for high-quality inclusive higher education opportunities;
• Execute a transition process that provides a smooth pathway to adult life; and
• Provide to students with Down syndrome and their families all the information needed to enable them to access adult services as they exit secondary education.

Please quote fully and reference National Down Syndrome Congress.
Prepared for and Approved by the Public Policy Advisory Council, National Down Syndrome Congress
Reviewed and Revised November 2018
View Position Statement as a PDF

The National Down Syndrome Congress (NDSC) believes that individuals with Down syndrome, like all Americans, have a right to live in their own homes, in the community. Adults should control where and with whom they live, have the freedom to choose their daily routines and activities, and they should have opportunities to rent or buy their own homes. We are committed to advancing policies that:

• Empower individuals with Down syndrome and their families to make informed choices about where and with whom they live, and respect individuals’ choices. “Informed choice” should include providing understandable information about the benefits of living in inclusive settings in the community, opportunities to meet people with disabilities who are living in their own homes, and other experiences in inclusive community settings;
• Safeguard the health and safety of individuals with Down syndrome wherever they live, while recognizing their right to take risks and exercise choice and control;
• Promote the full inclusion of individuals with Down syndrome in typical community settings and alongside peers both with and without disabilities;
• Increase access to, and coordination of, home and community-based support systems funded through Medicaid and other mechanisms;
• Expand affordable housing programs and reduce waiting lists;
• Minimize transportation barriers that restrict access to the broader community;
• Provide supports, education and training to improve the ability of individuals with Down syndrome to live as independently as possible;
• Protect individuals with Down syndrome from housing discrimination so they have opportunities comparable to those of people without disabilities to rent or buy their own homes; and
• Improve the coordination and implementation of the complex systems of supports and services for adults with Down syndrome and other disabilities.

Please quote fully and reference National Down Syndrome Congress.
Prepared for and Approved by the Public Policy Advisory Council, National Down Syndrome Congress
Reviewed and Revised November 2018
View Position Statement as a PDF