Position Statements

The following information represents the NDSC’s position on specific topics.

Self-determination for All People with Down Syndrome

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 which “moves” with the person.
  • Support, the organization of these resources as determined by the person with Down syndrome and his or her allies: contracting for specific tasks for which one needs assistance.
  • Responsibility, the wise use of public dollars; includes 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; and
  • Grow into responsible adults.

While opportunities and services for people with Down syndrome have continued to expanded, 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.

The National Down Syndrome Congress and the National Down Syndrome Society fully support self-determination for all people with Down syndrome, and agree to make self-determination a major priority in each of our organizations.

Please quote fully and reference National Down Syndrome Congress.

Reviewed 2010

Employment

For Individuals with Intellectual Disabilities

October 1, 2010

The NDSC promotes equal rights and opportunities for individuals with Down syndrome. To many individuals, this includes the opportunity to engage in full or part time work. However, the current system with its lack of infrastructure and disincentives to employment (e.g., fear of loss of cash benefits, health insurance) presents barriers to equal opportunity in the workplace.

Many individuals with complex support needs have demonstrated their ability to successfully work full or part time as appropriate to their individual interests and capacities) on jobs of their own choosing, with individualized training, accommodations and systems of ongoing support to maximize their job potential.

NDSC suggests the following components and accompanying standards to ensure quality employment services for community-based adult service systems across the country. It is important that federal and state systems adopt these new standards and redirect available funding in accordance with these standards.

STANDARD #1: Person Centered Planning is utilized to develop employment plans.

Person-centered planning is accomplished through partnerships among the individual, family members, friends, professionals and others involved in the individual’s life. Real self-determination can only be achieved when the individual, with his or her family members, has control over their own resources and the power to chose what activities to engage in and who will provide their supports.

STANDARD #2: An inclusive work setting is always the first service option.

NDSC draws from lessons learned from the most significant federal initiatives of the past three decades (supported employment, choice demonstrations, customized employment) to set inclusion as one of the highest employment standards for individuals with intellectual disabilities. (see definition in footnote) It is now time for states to draw from these lessons as well, strengthening policies and revising funding strategies to support workplace inclusion, grounded in individualized job planning, on-the-job training, and on-going support, as the first service option made available to an individual.

STANDARD #3: Equal pay for equal work in competitive work settings.

Competitive Employment. Inclusive employment must be accompanied by competitive wages. Individuals with disabilities should have access to the same wages and benefits as their co-workers, not singled out for a separate system of pay.

STANDARD #4: Transition Planning

Transition from school to work. It is well demonstrated that youth with disabilities who leave school without a job/job training are less likely to experience employment success. Strong transitional planning as early as possible (at least by the age of 14) is essential to successful employment outcomes as youth leave school. Both IDEA and the relevant programs in the Workforce Investment Act, including the Rehabilitation Act, must establish once and for all a strong transition program for youth with disabilities that includes employment related planning and systems collaboration.

Other important elements of a comprehensive system to support inclusive, competitive employment opportunities include:

STANDARD #5: Other important elements of a comprehensive system to support inclusive, competitive employment opportunities include:

Capacity building. A major key to success in supported, customized employment and entrepreneurship is a solid local service delivery infrastructure. Standards-driven provider agencies with well trained management and front line workers provide the best option for meeting the identified needs in the community. Public funding must be made available to adequately support best-practice assessment, job development, job training and periodic ongoing, long term supports. This task should begin in middle schools and continue through secondary and adult transition programs.

Collaborative Planning and Funding Distribution With no single point of entry, services for adults with intellectual disabilities are disconnected and confusing. Separate funding streams are driven by disparate rules and regulations, which results in the inefficient use of public resources. Recent research and practice has exhibited the effectiveness of individualized budegets and utilizing braided and blended funding. This approach demonstrates cost-effectiveness in achieving articulated individual goals, including those that focus on employment. NDSC strongly recommends changes in federal and state level policy to support such interagency, collaborative funding, with the individual being front and center in the development of his/her plan.

Assistive Technology. Individualized accommodations take on many different forms, many of which are simple technology adjustments to address intellectual and/or physical capacity. Whether simple or complex, assistive technology is an essential component to the employment success of many workers with intellectual disabilities. Stronger federal and state policy and more flexible funding streams are important to ensure access to a full array of technology support in the workplace. Partnerships with state assistive technology projects, assistive technology centers and local universities can assist with access to the latest use of technology, equipment and applications for the workplace.

Benefits Planning and Management. Social Security and Medicaid are lifelines for individuals with intellectual disabilities. Individuals do not work because their eligibility for benefits would be jeopardized.

Without expert benefits planning and management, the best of practices will not be promising enough to overcome the fear of the loss of Social Security benefits and health insurance. Federal programs such as Work Incentives Planning and Assistance Projects (WIPA), Disability Program Navigators (DPN), and the Medicaid Buy-in program are widely used by individuals and their families to guard against disaster as individuals make plans to become employed, and must be protected for as long as this assistance is needed. In addition, private alternative funding resources should be considered including the use of special needs trusts and other saving plans to access needed support services.

Employer Outreach and Intermediaries. A major disincentive to employment is the reluctance of employers to add individuals with intellectual disabilities to their workforce. This barrier may be removed through the use of intermediaries who can effectively represent workers with disabilities by offering available work incentives as well as accommodation ideas. For example, the customized employment/supported employment provider agency would partner with the business to provide needed support for individual with disabilities and/or co-workers to ensure understanding of job duties as well as long term job retention. It is important that federal policy recognize and encourage the important intermediary role of those who can help open the doors in the local community based job market. The Work Opportunity Tax Credit (WOTC) is also a business partner support that can be used as a hiring incentive. The development of social support networks for workers with disabilities is another employer outreach technique that mirrors the strategy used by “typical” job seekers. Such alternative approaches should be further explored through federal policy and funding support.

Funding Redirection. A major challenge for most community based systems is insufficient funding dedicated to inclusive employment strategies. While there is always a need for more funding, NDSC takes the position that a simple and efficient redirection of currently available funds would go a long way toward meeting the employment needs of individuals with intellectual disabilities in most communities. In these economically challenging times, the funding of segregated services promising only a lifetime of dependency is an inefficient and ineffective use of public dollars.

Conclusion

The opportunity to work and earn wages should be available to individuals with Down syndrome. The decisions about where to work and the supports needed, as with all decisions, should made by and behalf of individuals controlled by the individual/family members in collaboration with service providers, community partners and others who are an important part of their planning team.

Reviewed 2010

Depression in Persons with Down Syndrome

Can People with Down Syndrome Have Depression?

Just as persons with Down syndrome are as susceptible to illness as is the general population, so are persons with Down syndrome just as susceptible to depression. Specifically, depression in persons with an intellectual disability has been estimated at 6 to 7%.

What are Signs or Symptoms of Depression?

It is important that any of the signs and/or symptoms of depression be closely assessed to determine if they are symptoms of a biological/medical condition (e.g., seizures) or a condition in itself (i.e., depression). Depression may present differently in persons with Down syndrome. They would be less likely to verbalize feelings of sadness, guilt or worthlessness because of articulation and conceptual limitations. Nevertheless they would 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 there may be a 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.

Depression may be missed because the family is told that the signs and/or symptoms are just “the Down syndrome.” Signs and/or symptoms might also be misinterpreted as dementia or Alzheimer disease. Parents are primarily the first people to notice these signs/symptoms. It is very important that if any signs/symptoms are present that professional assistance be sought to avoid more serious problems later, such as placement in a psychiatric facility.

What Can Cause Depression in Someone with Down Syndrome?

Depression can occur as a result of current stress (acute), such as the death of a family member, or develop as a more chronic condition. A recent history of the person’s life is necessary in order to define the problem, if possible, and identify available support systems. Assessment must be carried out according to the individual’s cognitive/developmental level.

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 that are capable (e.g., social activities, hair style, clothing choice, etc.). They may be treated as children and feel little, if any, control over their lives. Individuals who care for adults with Down syndrome may overlook support systems, over protect the person, and/or inappropriately take punitive actions toward the person with Down syndrome.

What Can be Done to Prevent/Alleviate Depression?

Presently, many physicians, psychologists and other mental health professionals have had little training in psychiatric conditions and intellectual disability, leaving room for missed or misdiagnosis. The clinical presentation of depression in persons with Down syndrome may be different from someone without a cognitive deficit. A preventive approach to depression in persons with Down syndrome is suggested. Given the opportunity to take some control over their lives, persons with Down syndrome will experience fewer occasions for depression 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. It is known that more behavioral problems occur when persons are bored and little structure is present in their lives. When early diagnosis is made, it is important that the treatment plan be individualized and follow up available. It is also important that treatment involve the best environment and quality of life possible. When anti depressant medications are necessary, information for the families concerning side effects and the prevention of side effects through periodic blood levels and discontinuation trials are important.

Much more study must go into examining depression in persons with Down syndrome. Understanding why a person feels depressed and alleviating the source(s) is often a challenging endeavor. Successful prevention, intervention 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/medical community.

Please quote fully and reference National Down Syndrome Congress.

Prepared for and Approved by the Professional Advisory Council,
National Down Syndrome Congress March 1992
Reviewed and Revised February 2006

Management of Challenging Behaviors

Like their peers without identified disabilities, individuals with Down syndrome may display behavior that is off task, non-compliant, interferes with learning or disrupts on-going activities. For any individual, these challenging behaviors may be occasional events or may represent consistent patterns of performance.Just as the last 15 years have witnessed tremendous change in both the values and practice of special education, so have researchers and practitioners in the field of behavior management dramatically changed how they think about and deal with “behavior problems.” There was a time when challenging behavior was treated as if it were something undesirable that had to be eliminated or reduced. 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 disabilities, any intervention was acceptable as long as it worked.Recently school and community services for individuals with disabilities have begun to focus on lifestyle outcomes, not skill acquisition or behavior management goals in isolation. 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 so on) and then design behavioral and instructional supports necessary to ensure access to 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 been more strongly guided by the principle of normalization and has acknowledged the basic rights of individuals with disabilities, educators, employers and family members have been forced to question the appropriateness of some procedures that had become accepted practice. All interventions are not equal. Those that violate individual rights or that are unacceptable to normal school and community audiences now merit careful scrutiny.Research has shown that so-called maladaptive or inappropriate behavior can 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, not as “naughty,” but as attempting to communicate, underscores the importance of teaching acceptable methods of communication as a way of dealing with challenging behavior.

Any effort to develop guidelines for the use of behavior management techniques is complicated by several factors. First of all, 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 is difficult to offer guidelines for school and community programs when families themselves display such diversity.

A second factor that makes the discussion of behavior management difficult is the very fact that makes the discussion necessary: the horror stories of things done in the name of managing challenging behavior. There are reports of children left unattended in time-out closets for extended periods of time; of children restrained so long that they enjoy no educational programming; or individuals whose behavior is managed with chemicals in the absence of active programming; of people who are “treated” with procedures that hurt, humiliate or deny basic rights. Sometimes the “problem” seems relatively minor (e.g., failure to comply with a teacher’s instruction); sometimes the challenge is clearly more significant (e.g., high rates of head banging or other self-injurious behaviors).

Despite the 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 the 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.

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 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 apparent handicaps (illness, exhaustion, disruptions of routine, divorce, death of a family member, adolescence, high stimulus situations, and so on) 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.”

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 individuals “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.

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.

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. 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.

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 which 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.

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 atypical, or that appear aversive to the person, or discomforting to the teacher, employer or onlookers, should be used in limited and controlled conditions. There should be

  1. documentation that the program uses a functional curriculum and employs effective procedures to deliver training and support,
  2. a comprehensive functional analysis to ensure that the intervention has a reasonable probability of success,
  3. a review process to ensure informed parent consent and to verify that the nature of the challenging behavior justifies an extraordinary intervention,
  4. a commitment to use the procedure only on a short-term basis,
  5. simultaneous use of positive procedures to build appropriate behavior, and
  6. careful monitoring of both the person’s and the trainer’s behavior.

Procedures that are intrusive or atypical should never substitute for positive programming.

——————————————————————————–

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

  1. involve the delivery of pain;
  2. result in tissue damage to the individual with a disability; or
  3. violate local standards of dignity and respect.

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

  1. acknowledge the role of environmental variables in developing and maintaining behavior;
  2. respect the dignity of the individual with a disability; and
  3. 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 Committee
National Down Syndrome Congress
January, 1990
Reviewed 2010

Quality Education for Students with Down Syndrome

In recent years there has been a growing commitment to excellence in education and a general recognition that it is the quality of education afforded its students that is perhaps the most important predictor of a nation’s future.Like their peers without identified disabilities, students with Down syndrome have the same right to expect a quality, education that prepares them for valued and productive roles as citizens of their communities. The purpose of this statement is to highlight features of quality programs for students with disabilities.

Features of quality programs are derived from several sources: (a) the large research literature on effective schools, (b) research on the development and learning capacity of individuals with Down syndrome, (c) model programs that demonstrate what is brought to bear to educate all students, and finally, (d) values regarding the rights of individuals with disabilities and their place in the larger society.

In 1975, Congress passed Public Law 94-142 (Education of All Handicapped Children Act), now codified as IDEA (Individuals with Disabilities Education Act).

This law is very important in the lives of children with disabilities. Under the law, early intervention services are provided to eligible infants and toddlers with disabilities, and special education and related services are made available to eligible school-aged children.

The most recent re-authorization of the law is The Individuals with Disabilities Education Improvement Act of 2004 (IDEA 2004) which was signed into law on December 3, 2004. Most provisions of the revised law take effect on July 1, 2005.

1. Students Have The Right To Integrated Services in Local Schools.

  • Students with disabilities have the right to attend schools in their neighborhood along with brothers and sisters, friends and neighbors who have no identified disabilities. Attending an integrated and age-appropriate school campus provides important learning opportunities for all students.The neighborhood school should be the planning base for decisions about educational placement. The resources of special education should be available to educate a student in his or her home school. Eligibility for special education should not be tantamount to a transfer from the neighborhood school and a long bus ride.School assignments for students with disabilities should be as stable as they are for students without identified disabilities. Continued attendance at a local school should not depend on the availability of space for a special classroom. Once a student is assigned to a regular building, he or she should continue there as long as others in his or her age group.
  • As a rule of thumb, a student with a disability should not be required to travel farther to his or her school program than does a student without disabilities.
  • Schools should provide structured opportunities for students to take social advantage of the close-to-home placement. There should be active efforts to promote friendships and build social networks that include students with and without disabilities.

2. Students Have The Right To Be Taught Well.

  • There must be high expectations both for students with Down syndrome and for the professionals who serve them. Students must be expected to achieve and professionals must be expected to promote achievement.Teachers must be trained to provide effective instruction and to accommodate individual differences. They must extend their skills as more diverse groups of students attend their schools and their classes.School systems must provide services that students need, not only those services they presently know how to deliver.
  • Related services (such as speech and language, occupational and physical therapies) should be brought to the student rather than sending the student to the location of services.
  • Principals should be prepared to advocate excellence in education for all students, recognizing that excellence is not synonymous with improved achievement on standardized tests.
  • Educational administrators must assume a leadership role in implementing best practices for all students.

3. Students Have The Right To A Curriculum that Is Individualized, Functional and Future-Oriented.

  • Simply stated, students have the right to an education that leads somewhere. Valuable time in school should not be wasted on what is trivial or simply easy to teach. Schools should not impose limits on what students with Down syndrome can learn. Students have the right to be exposed to the full range of curriculum and educational opportunities available to their peers without identified handicaps. The presence of Down syndrome does not reflect an absence of capacity to learn academic skills.
  • Each student’s IEP should be truly individualized. The preferences and values of individuals with Down syndrome and their parents should be respected in the goal setting process.
  • Schools must adopt a future orientation that defines success with reference to students’ lifestyles after leaving school.
  • School curriculum should be directly linked to the achievement of post-school outcomes of work and integrated community life.
  • All students should have work training opportunities in the community. No student should be presumed to be too disabled to be prepared for meaningful and integrated community life.

4. Students Have The Right To Be Treated With Dignity As Full Citizens Of Their School Communities.

  • There should be a general absence of labeling. All students including those with disabilities are people first.Schools should actively promote respect for human diversity.
  • Students with Down syndrome should have the same access to the same events, facilities, and resources, as do students without disabilities.
  • Participation in normal school and community events is a right not a privilege for which students have to qualify.
  • Students with disabilities must be recognized as individuals. Variation in behavior, affect and health are part of the human condition and not specific to Down syndrome.

5. Students And Their Families Have The Right To Transition Support And Planning Throughout The School Years.

  • Schools should promote active parent and family involvement in decision-making. It is the family, not the educational system, that has the most long-standing and vested interest in a child with a disability.

The agenda of the National Down Syndrome Congress reflects a commitment to the rights of students and to the implementation of quality educational services.

Education is only one of many systems that support individuals with Down syndrome. In order to realize fully the effects of educational excellence, the NDSC promotes integration and best practice standards for programs that provide work, living and recreational opportunities for people with disabilities.

Please quote fully and reference National Down Syndrome Congress.

Prepared for and Approved By:
The Board of Directors
National Down Syndrome Congress
Nov. 18, 1988
Reviewed May, 2005

Inclusive Education for Students with Down Syndrome

What is the Background?

Historically, mainly 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 clasroom, 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: “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 to teachers, parents, and students the necessary conditions to yield quality education. 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
  • 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
  • Facilitiation 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.

January, 1997
Reviewed May, 2005

Prenatal Screening and Diagnosis

Synopsis

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) currently recommends screening all pregnancies for fetal chromosomal anomalies, including Down syndrome (trisomy 21)

In formulating the ACOG Guidelines, the mere existence of fetuses with trisomy 21 is more likely to be considered diminished or devalued, thereby jeopardizing the protections customarily afforded to any fetus or potential person.

The ACOG Guidelines make only cursory mention of other detectable chromosomal conditions, rather it clearly and preferentially singles out fetuses with trisomy 21 for early diagnosis.

The reasons for 1st-trimester screening in the general population, as a medically necessary standard-of-care procedure, are not well justified.

NDSC Recommendations

  • Improve the regulation of informed consent and disclosure of information regarding prenatal 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
  • Monitor statistics regarding termination and non-termination rates for all fetuses with chromosomal anomalies, including trisomy 21.

Download Full Position Statement including supporting data, NDSC response to ACOG recommendations, and supporting references.

Reviewed 2010

Piracetam

“Piracetam” is a cyclic derivative of gamma-aminobutyric acid (GABA), and a representative of what are commonly known as the “nootropic” drugs. It is manufactured overseas by several companies, and marketed in Europe, Mexico, and South America. It does not have Federal Drug Administration approval for any use, and does not appear in the Physicians Desk Reference. It is easily available over the internet where many claims about its usefulness in a variety of settings are made.

There have been few studies reported in the scientific literature on the use of piracetam in children with Down syndrome.

The studies that have been reported are;

  1. Archives of Pediatric and Adolescent Medicine, in April 2001, published an article by Lobaugh, NJ, et al., titled “Piracetam Therapy Does not Enhance Cognitive Functioning in Children with Down Syndrome.” This was a randomized, double-blind, placebo controlled, cross-over study. The results “Eighteen children completed the study, 4 withdrew, and 3 were excluded at baseline. Piracetam therapy did not significantly improve cognitive performance over placebo use but was associated with central nervous system stimulatory effects in 7 children: aggressiveness (n=4), agitation or irritability (n=2), poor sleep (n=1), and decreased appetite (n=1).”
  2. In Physiology of Behavior in November 2002, Moran TH, and Capone GT, et al., published a paper with the title “The effects of Piracetam on Cognitive Performance in a Mouse Model of Down’s Syndrome.” Ts65Dn mice have a trisomic area of mouse chromosome 16 that is analogous to human chromosome 21. The different sets of treatment mice were given either 0, 75, 150, or 300 mg/kg of piracetam during a 4 week period. The authors concluded “In summary, these data do not provide support for piracetam therapy to improve cognitive performance in children with DS. Although there was some small improvement in the visible-platform component of the Morris water maze task with low-dose piracetam treatment, piracetam prevented learning in the more complex hidden-platform component. Together with recent clinical data, these results using a preclinical model with many genetic and behavioral features of DS provide no rationale for piracetam treatment in children with DS.”

Without studies and research information proving a benefit and documenting a lack of adverse reactions to piracetam therapy we cannot recommend its use at this time.

Please quote fully and reference National Down Syndrome Congress.

Prepared for and Approved By:
The Professional Advisory Committee,
National Down Syndrome Congress
May 8, 2012

Atlanto-Axial Instability

What is Atlanto axial Instability?

Atlanto axial 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 Atlanto axial Instability Identified?

Screening for AAI involves both x rays and physical examination. The physical examination looks for any changes that might suggest pressure on the spinal cord. X rays of the head and neck are taken from the side (lateral view) with the head in a normal position as well as with the head bent forward (flexed) and tilted back (extended).

A space between parts of the first and second cervical vertebrae (atlanto dens space) of more than 5 millimeters is considered suggestive of atlanto axial instability.

How Often Does Atlanto axial Instability Occur?

85% of individuals with Down syndrome have no evidence of atlanto axial instability. 13 14% show evidence of instability by x ray only and have no symptoms. This is called asymptomatic atlanto axial instability. Only 1 2% have symptoms that may require treatment. These individuals are referred to as having symptomatic atlanto axial instability. Symptoms may include neck pain or persistent head tilt, intermittent or progressive weakness, changes in gait pattern or loss of motor skills, loss of bowel or bladder control, increased muscle tone in the legs, or changes in sensation in the hands and feet.

What Should Be Done?

A child with symptoms that might be caused by pressure on the spinal cord should be examined and x rayed IMMEDIATELY!

Most physicians who are knowledgeable about children with Down syndrome recommend that all children with Down syndrome be screened with x rays during the preschool years. Screening before age 2 or 2 1/2 may be confusing because the bony structures may not show up clearly.

If x ray evidence of instability is found but the individual has no signs or symptoms of spinal cord pressure after careful examination by his/her physician, no special treatment is needed.

The 13 14% of individuals who have asymptomatic atlanto axial instability require no special medical or surgical treatment. However, these individuals may want to avoid activities that may put extra strain on the neck. High risk activities include gymnastics (especially tumbling and trampoline), diving, swimming the butterfly stroke, high jump, soccer, and collision sports (such as football). Individuals with asymptomatic AAI should have more frequent medical and x ray follow up.

For the 1 2% of individuals with symptomatic atlanto axial instability, surgical stabilization of the vertebrae is necessary. Such surgery should be performed by a neurosurgeon or orthopedic surgeon who is familiar with Down syndrome and who has experience treating atlanto axial instability.

Re screening of the 85% group of children with Down syndrome who have normal x rays and no symptoms is a matter of debate. However, since there have been reports of such individuals who were later found to have AAI, a common recommendation is to re screen once each decade.

All individuals should be screened before surgery that will involve the use of a breathing tube since there have been rare reports of neck injury during placement of the breathing tube.

Please quote fully and reference National Down Syndrome Congress.

Prepared for and Approved By: The Professional Advisory Committee,
National Down Syndrome Congress
January, 1991
Reviewed 2010

Download Full Position Statement including supporting data.

Megavitamin Therapy

The National Down Syndrome Congress has stated many times it is not opposed to a normal vitamin supplement used in connection with a good nutritionally balanced diet. Vitamin supplements taken in amounts approximately equal to the RDA’s will encourage good health in most people. Caution, and your Doctor’s advice should be taken into account at all times.

Initial studies on megavitamin therapy use in people with Down syndrome began in 1959 with the development of a “U” series therapy which was claimed to decrease the anatomical, mental and physical abnormalities characteristic of Down syndrome (ref. 1). The reasoning for the purported effectiveness was supposedly related to the removal or reduction of “unmetabolized” body chemicals that “interfere” with normal development. The “U” series consists of over 50 different hormones, vitamins, minerals and miscellaneous substances. The “preparation” has never been approved by the Food and Drug Administration (FDA) the agency within the U.S. Government that tests and approves drugs for safe use in humans although such approval has been sought.

In 1981, a report appeared stating that the use of a megavitamin preparation containing 11 vitamins and eight minerals, some up to 400 times the recommended daily dose, changed the IQ and physical appearance of some of the four children with Down syndrome in the study group (ref. 2). The experiment was criticized in a policy statement by the American Academy of Pediatrics in 1981 on the basis that “unselected administration of megavitamins to all children with mental retardation is not warranted on such scant and unconvincing experimental evidence” (ref. 3). A follow up study tested 21 adults (seven with Down syndrome) using the same vitamin and mineral mixture (ref. 4). No substantial or statistically significant changes were noted.

Another author studied 24 children with Down syndrome aged 6 11 years given the same nutritional supplement (ref. 5). There were also 23 control children involved. These children were matched as to early infant stimulation experience and all were living at home and attending school. The Stanford Binet Intelligence Test and Visual Motor Integration Test were administrated before the nutritional supplement and again after four months. No significant differences were found nor were behavioral or physical appearance changes noted.

The study was again repeated with children with Down syndrome aged 5 13 years in order to test the “orthomolecular hypothesis” (ref. 6). This study employed a complete double blind case controlled method with each pair matched for age, sex, race and socioeconomic status. All children were tested and had normal thyroid function before beginning the study. These children were then tested after eight months for changes in intelligence quotient (Stanford Binet), academic achievement (Peabody), speech and language assessment (Peabody Picture Vocabulary Test, Illinois Test, Psycholinguistics, Detroit Test of Learning Aptitude) and for physical and behavioral changes. No significant changes in any parameter were elucidated.

The study was tested again in an older and institutionalized population in 1984 (ref. 7) with the average age of the participants being 21 years. Four had Down syndrome. The supplement was the same that was used in the other studies. This study ended with no significant alterations in the parameters of function.

In the largest follow up study, 56 school age children with Down syndrome were evaluated at four and eight months using a well recognized battery of psychological, physical and developmental tests (ref. 8). No increase in intelligence or diminution in any form of other characteristics of Down syndrome could be found. All of these studies have been unable to verify any of the claims which had been advanced regarding the benefits of the so called megavitamin therapy. The following statements can thus be made:

  1. To date, no vitamin or mineral nutritional supplement is known that will alter significantly the intelligence, physical characteristics or behavioral features of Down syndrome and, thus, none are supported by the National Down Syndrome Congress.
  2. Any substance that is claimed to significantly affect intelligence must be carefully evaluated with control individuals utilized and multiple variables measured such as thyroid function, other nutritional substances being taken, stimulation and general state of health.
  3. Certain vitamin supplements are potentially toxic and can alter liver function. Vitamin A in excess can cause neurologic and dermatologic abnormalities. Vitamin C in excess can cause urinary tract irritation and frequency. Long term effects of megavitamin therapy are not known.
  4. Metabolism of cells in persons with Down syndrome may indeed be altered but, to date, no specific vitamin or mineral regimen has been found in any way to ameliorate the features of Down syndrome as noted before.
  5. Claims made by certain programs that particular vitamins “relieve,” “improve,” “promote,” “delay” or “aid” aspects of Down syndrome are not scientifically proven in persons with Down syndrome.

The Following are Conclusions Quoted from Resources Listed on the National Down Syndrome Congress’ References on Vitamin Therapy

1. Selikowitz, MD, Mark. 1990. “Controversial treatments” Chapter 15 in Down Syndrome, The Facts. Oxford University Press, New York. 180 187.

High doses of vitamins and minerals are another treatment suggested for children with intellectual handicap. This sort of treatment is particularly advocated by those calling themselves orthomolecular physicians. Although there are some rare inborn disorders that respond to certain vitamins, Down syndrome is not one of these. Trials of high doses of vitamins in children with Down syndrome have failed to show any improvement in the children treated. In fact, some vitamins can accumulate in the body and have toxic effects, slowing down the child’s development and causing ill health.

2. Rogers, MD, Paul T. & Mary Coleman, MD. 1992. Medical Care in Down Syndrome. A Preventive Medicine Approach. Marcel Dekker, Inc. New York, NY. 275.

Independent attempts to confirm the claims of Haubold et al., Turkel, and Harrell et al. with studies using patients and controls have not been positive. A great deal of time and energy using double blind studies and other scientific techniques has been spent by a number of university research centers in an effort to check these claims. Confirmation of these multiple high dosage vitamin studies was not forthcoming. In fact, an attempt to replicate the Harrell et al. therapy by Bidder et al. resulted in a great frequency of side effects, as even reported by the parents themselves.

3. Pueschel, MD, Siegfried M. & Jeanette K. Pueschel. 1992. Biomedical Concerns in Persons with Down Syndrome. Paul H Brookes Publishing Co., Baltimore, MD. 4:39 46, 294 296.

Claims that megadoses of vitamins would increase the intelligence of individuals with Down syndrome have been made for a number of years. The evidence supporting these claims, however, has been unconvincing and not much attention has been focused on this therapy.” “In no instance did the megavitamin therapy result in an increase in intelligence, motor performance, or communicative abilities, or change the appearance of the children or adults studied. Unfortunately, some professionals continue to offer false hope to parents by promising changes with this therapy.

4. Lott, MD, Ira T. & Ernest E. McCoy, MD. 1992. Down Syndrome, Advances in Medical Care. Wiley Liss, Inc. New York, NY. 173, 88 90.

There are no controlled studies which show any substantive benefit to children with Down syndrome who have received mega vitamin or sicca cell therapy. Until such studies are available, these forms of therapy cannot be recommended.

References

1. Turkel H. Paper presented at meeting of American Association for Advancement of Science.

2. Harrell, R. PNAS, USA 78 (1), 574 578, January, 1981.

3. American Academy of Pediatrics Policy Statement, News and Comments, August, 1981.

4. Ellis, N. Vitamin/Mineral Supplements and Intelligence of Institutionalized Mentally Retarded Adults. Am. J. Mental Deficiency, 88 (2), 211 214, 1983.

5. Weathers, C. Effects of Nutritional Supplementation on IQ and Certain Other Variables Associated with Down Syndrome. Am. J. Mental Deficiency 88 (2), 214 217, 1983.

6. Bennett, F. Vitamin and Mineral Supplementation in Down(‘s) Syndrome. Pediatrics 72 (5), 707 713, November, 1983.

7. Ellman, G. Vitamin Mineral Supplement Fails to Improve IQ of Mentally Retarded Young Adults. Am. J. Mental Deficiency 88 (6), 688 691, 1984.

8. Smith, G. F. Use of Megadoses of Vitamins with Minerals in Down Syndrome. J. Pediatrics 105 (2), 228 234, August, 1984.

Please quote fully and reference the National Down Syndrome Congress.

Prepared for and Approved By: The Professional Advisory Committee,
National Down Syndrome Congress
Originally Approved 4/2/89
March, 1995
Reviewed 2010

Health Care Insurance Reform

I. Why Do We Need Health Care Insurance Reform?

People with Down syndrome have been and continue to be discriminated against with regard to access to health insurance, solely on the basis of the diagnosis of Down syndrome and without consideration of their individual health status or health histories.

For those people with Down syndrome who do have congenital or other health conditions requiring medical interventions, insurance companies have denied them access because of their preexisting conditions.

The whole issue of access to health insurance places an extraordinary burden on families and persons with Down syndrome and other disabilities. Families and adults with Down syndrome are forced to consider issues of obtaining or maintaining health insurance coverage above career and other significant life decisions. Even when they are able to access health insurance coverage, the financial costs can be exorbitant.

Both historically and within the context of reform movements, people with Down syndrome and other disabilities face considerable challenges to accessing quality care. People with down syndrome are entitled to receive any and all treatments that are medically indicated. Proposed health care delivery systems which involve rationing of services threaten to have a disproportionately negative impact on persons with disabilities. Quality of life defined by persons with disabilities is not an acceptable rationing criterion.

II. What Features Must Be Included in Any Health Care Insurance Reform Plan?

  • Universal access to health care insurance
  • Comprehensive coverage which cannot be denied because of health or disability status;
  • No pre-existing condition exclusions or waiting periods
  • Portability – one does not loose health insurance if one moves, changes jobs, or loses a position
  • Community rated premium, that is, health plans must charge everyone the same rate, regardless of health or disability status
  • No lifetime caps on medically necessary and/or covered services
  • Choice of services provider and specialists who are appropriately trained and committed to meeting the medical needs of people with Down syndrome
  • Affordability

III. Should Long-Term care (Medicaid) Be Included in Any Health Care Insurance Reform Proposal?

Although many of the health care insurance reform proposals do not address the issue of long-term care reform, those that do significantly restrict eligibility for person with Down syndrome in ways that would deny home and community based services and supports to them.

In view of the following circumstances:

  • The longstanding need for comprehensive Medicaid reform
  • The complex nature of the needs and of the existing system of long-term care
  • The reliance upon Medicaid funding for long-term care services, including residential services
  • The barriers to service created under proposed eligibility standards

The NDSC, therefore, recommends:

A reform of the long-term care system, independent of any health care insurance reform proposal, so that fair and adequate attention can be given to meeting the needs of people with Down syndrome and other disabilities.

Conclusion

The NDSC sees the national debate over health care as an opportunity to address the problems persons with Down syndrome and their families face in accessing quality health care services. We support the enactment of truly universal comprehensive health care that is equally available to all Americans, regardless of health or disability status. We believe that adequate health care is a basic human right.

The NDSC believes that any federal or state health care reform proposal must be based upon the principles of Non-discrimination, Comprehensiveness, Appropriateness, and Equity. The only acceptable health care reform proposal must offer guaranteed. Comprehensive health care to ALL Americans.

Please quote fully and reference the National Down Syndrome Congress.

Prepared for and Approved by: Board of Directors
National Down Syndrome Congress
1993
Reviewed 2010