research questions about developmental disabilities

CLARISSA KRIPKE, MD

Am Fam Physician. 2018;97(10):649-656

Related Close-ups : Persons with Disabilities: I'm the Expert About My Body .

Author disclosure: No relevant financial affiliations.

Developmental disabilities are attributable to a cognitive impairment, physical impairment, or both. They manifest during the developmental period from birth to early adulthood, and are likely to continue indefinitely. The life expectancy of most persons with developmental disabilities now approaches that of the general population. According to the neurodiversity model of care, developmental disability is accepted as a valued part of human neurologic diversity. The social model focuses on improving participation in society with accommodations such as adaptive equipment or improvements to the social and physical environment. The goal of health care for patients with developmental disabilities is to improve their well-being, function, and participation in family and community. Physicians should communicate directly with their patients, even those who have communication or cognitive differences. Communication may include speech, sign language, writing, letter boards, voice output devices, pictures, facial expressions, gestures, vocalizations, and behavior. Supported decision making is a paradigm, support practice, and emerging legal structure that focuses on assisting patients with communicating their wants and needs as an alternative to guardianship or power of attorney. When establishing care, it is critical to get a detailed history of baseline traits and characteristics in the areas of cognition and communication; neuromuscular function; sensory function such as vision, hearing, and sensory processing; seizure threshold; mental health; and behavior. In general, guidelines for age-appropriate health maintenance in the general population should be followed unless the risk outweighs the benefit for an individual patient. With accurate diagnosis, psychiatric conditions can be treated effectively with the same medical, behavioral, and therapeutic modalities used in the general population. Just like any patient, those with developmental disabilities should have access to a full range of life-sustaining, curative, and end-of-life services.

Developmental disabilities are attributable to a cognitive impairment, physical impairment, or both. They manifest during the developmental period from birth to early adulthood, and are likely to continue indefinitely. Developmental disabilities result in substantial functional limitations in three or more areas of major life activity, including self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living, and economic self-sufficiency. 1 Common diagnoses associated with developmental disabilities include cerebral palsy, intellectual disability, autism, and epilepsy.

The life expectancy of most persons with developmental disabilities now approaches that of the general population. 2 For example, the mean age of death for a person with an intellectual disability was 19 years in the 1930s and 66 years by the 1990s, and it continues to improve. 2 The civil rights of persons with disabilities have also advanced as they have been fully integrated into mainstream society, including medical practices. Family physicians can help patients with developmental disabilities maximize their potential by presuming they have an ability to learn and using appropriate communication support tools. Physicians can also help by responding promptly to urgent medical problems, providing age-appropriate health maintenance, and assessing risk to prevent secondary complications.

Medical vs. Neurodiversity and Social Models of Disability

Persons with disabilities are often healthy, and disability should be distinguished from illness. In the medical model, disability is viewed as a deficiency or disease that needs to be overcome. However, persons with developmental disabilities have a wide range of strengths, challenges, and support needs. The neurodiversity and social models view disability as a natural part of the human experience. They focus on maximizing potential as opposed to normalization, and encourage individuals with disabilities to pursue their strengths while mitigating weaknesses. 3 The neurodiversity model accepts developmental disability as a valued part of human neurologic diversity. 4 , 5 The social model focuses on improving participation in society with accommodations such as adaptive equipment or improvements to the social and physical environment. 6

The goal of health care for patients with developmental disabilities is to improve their well-being, function, and participation in family and community. It is not always necessary or desirable to try to change a person's traits and characteristics to make them appear or behave more normally. The distinction between the medical, neurodiversity, and social models has important implications for medical care.

For example, in the medical model, persons with a mobility impairment might receive intensive physical therapy, surgery, and braces to help them walk. In the social model, interventions might include a motorized wheelchair; wheelchair lifts, ramps, and scales; and adaptive physical education for strength and cardiovascular health. In the medical model, someone with dysarthria might be referred for speech therapy to improve articulation because people primarily communicate through speech. However, in the neurodiversity model, the individual's most effective means of communication would be accepted because his or her potential for producing clear, fluent speech might be limited, slow, and effortful. Therefore, he or she might use augmentative and alternative communication such as pointing to picture icons or typing on a keyboard, which might allow more complex thoughts to be communicated clearly and to a broader audience. He or she also might receive a voice output device to translate picture icons or text into sound. In the medical model, persons with short stature might receive growth hormone, whereas in the social or neurodiversity model, they may be referred to vocational training to pursue a career that interests them and for which they can perform the essential functions with or without accommodations.

Accommodations and Access

Regardless of functional limitations, with appropriate medical care, accommodations, and decision-making support, persons with developmental disabilities can live quality lives in their own homes and communities. Accommodations can include disability services, housing modifications, and adaptive equipment. Physicians can support full inclusion and access to medical care for patients with disabilities by ensuring that their practices comply with guidelines for physical access. 7 This may require investments in adaptive equipment, such as wheelchair scales and lifts and high-low examination tables, and implementation of programmatic changes, such as longer appointments, reduced wait times, and home visits. For some patients, access can be improved with changes to the sensory environment, such as eliminating strong scents, and turning down alarms, televisions, and fluorescent or bright lights. 7

Approach to Communication and Supported Decision Making

Communication is the foundation of patient care. Communication can include speech, sign language, writing, letter boards, voice output devices, pictures, facial expressions, gestures, vocalizations, and behavior. 8 The physician should first note the patient's intent because, for example, not all movements are meant to be communication. Persons with cerebral palsy or autism may have difficulty controlling movements, and these involuntary movements can be impulsive or reflect difficulty with inertia. This can be misinterpreted as intellectual disability, lack of interest, aggression, or defiance. 9 , 10 Physicians should communicate directly with their patients, even those who have communication or cognitive differences. Gathering information directly from patients, as much as possible, is important because only they can report on their internal thoughts and symptoms. Patient perspectives may differ from that of family members, supporters, or physicians (see a related Close-ups piece previously published in American Family Physician at https://www.aafp.org/afp/2009/0601/p955.html ). With direct, respectful communication, a more accurate history can be obtained ( Table 1 ) .

Even with the best efforts, it is not always possible to accurately interpret someone's verbal or nonverbal communication. However, success rates improve with practice and employing a variety of strategies, such as establishing how a patient communicates yes and no, offering choices, or allowing extra time for the patient to respond. Using communication aids, such as plain language, picture supports, demonstrations, and alternative formats (e.g., electronic readers; large print; translations, such as into braille or the reader's native language) may be helpful. If a communication attempt is unsuccessful, future attempts are still important. At a minimum, patients should be included in discussions about decisions that impact them. At those meetings, physicians and others present should communicate directly with patients, even if they do not reliably respond. 11 For patients who do not have an effective method of expressive communication, a toolkit to assist with accessing communication assessments, adaptive equipment, and augmentative and alternative communication is available at http://odpc.ucsf.edu/communications-paper .

Individuals who accompany patients to appointments or who provide personal assistance have traditionally been called caregivers. However, the term supporter can encourage person-centered thinking that respects the patient's autonomy, even if the patient requires assistance to communicate or make decisions. 12 Supporters are helpful in a variety of ways. They can provide ancillary information, translate or interpret unclear speech or nonverbal communication, and break down concepts in a way the patient can understand. They can also report back if the patient needs time to process information outside of the appointment or help implement the health care plan. When a supporter speaks for a patient and the physician is unable to confirm the information directly with the patient, he or she can clarify the authenticity of the information by asking the supporter, “How do you know?” or “Did you ask the patient?” A video on working with persons who cannot communicate clearly is available at http://www.uctv.tv/shows/When-Listening-is-Complicated-Skills-for-Honoring-the-Individual-Perspectives-of-Every-Person-with-Disabilities-32191 .

Supported decision making is a paradigm, support practice, and emerging legal structure that focuses on assisting patients with communicating their wants and needs. It is an alternative to guardianship or power of attorney, which rely on the opinion of a third party to determine what is in the patient's best interest. 13 , 14 With supported decision making, patients retain their legal capacity. Instead of transferring decision making to a power of attorney or having a judge or hospital protocol assign a proxy decision maker, patients choose one or more supporters they trust, select the type of support they want, and receive help to make decisions or to communicate. Supported decision making acknowledges that a person's capacity fluctuates, while assuming that the ability to make and communicate choices often improves with support.

Even without disabilities, learning to make decisions in one's own best interest takes practice, some risk-taking, and learning from mistakes. 13 , 14 For example, few adults would make all of the same decisions they did when they were younger because they have had the opportunity to learn from their experiences. Supported decision making affords persons with disabilities the same opportunity. eTable A includes resources for more information about supported decision making.

Baseline Traits and Characteristics

In patients with complex disabilities, illness often presents as a change in behavior or function. Therefore, when establishing care, it is critical to get a detailed history of baseline traits and characteristics in the areas of cognition and communication; neuromuscular function; sensory function such as vision, hearing, and sensory processing; seizure threshold; mental health; and behavior. This baseline assessment will also help determine whether the patient is at risk of secondary medical problems and which primary and secondary prevention strategies, accommodations, and adaptive equipment are most likely to be beneficial ( Table 2 15 – 24 ) .

Most adults with developmental disabilities have had genetic, diagnostic, cognitive, speech, occupational, physical, educational, vocational, or developmental assessments. If assessments are outdated, referrals may be warranted. Accurate and thorough record keeping is critical because patients and supporters may not be able to provide a detailed medical history. Some conditions, such as dementia, may be more difficult to diagnose in the future without this baseline information. Systematically comparing current with past function is essential to recognizing treatable medical problems and rehabilitation potential.

Each area of function should be assessed independently because deficits in one area can be mistaken for deficits in another. For example, many patients who cannot speak or hear are assumed to have intellectual disabilities. Patients who routinely use wheelchairs to attend medical appointments may also be able to stand, walk, or crawl up stairs. Strengths in one area can mask challenges in another. For example, a patient who is fluently conversational may have significant problems with basic activities of daily living because of issues with memory or executive function that are not apparent in an examination room.

Health Maintenance

In general, guidelines for age-appropriate health maintenance in the general population should be followed for those with developmental disabilities unless the risk outweighs the benefit for an individual patient. In addition, because targeted physical examination and diagnostic testing may be less reliable in persons with communication, sensory, or cognitive challenges, physicians should be proactive at health maintenance visits to identify possible health problems with a complete history, physical examination, screening tests, and functional assessment. 25 , 26 Because of risk factors for dental problems in persons with developmental disabilities ( eTable B ) , preventive dental care is paramount. 27

Studies of comprehensive yearly health checks in persons with developmental disabilities reveal that unrecognized and undertreated medical problems are common. 28 Illnesses are often recognized later in the disease process, and atypical presentations of illness may not be triaged appropriately. Examples of presenting signs and symptoms of commonly unrecognized and undertreated conditions in patients with developmental disabilities are included in Table 3 . Ensuring timely care may require more frequent office visits and adjustments to office protocols. 29 Table 4 includes toolkits to help physicians optimize care for patients with developmental disabilities.

Sexual Health

Persons with developmental disabilities can and do have sex, marry, and have children. 30 , 31 They have a full range of sexual orientations. Gender dysphoria has been found to be particularly common among persons with autism. 32 Adults with developmental disabilities should receive sex education and access to a full range of reproductive services. 33

Pain Assessment

Because pain is an internal sensation, communication difficulties can complicate the assessment. Persons with developmental disabilities often have atypical behavior in response to pain. For example, they may not grimace, cry, or clutch the part of the body that hurts. Supporters often report that patients with developmental disabilities have a high pain threshold. This interpretation may be accurate because of atypical sensory processing, or the patient may feel the pain but does not show recognizable signs of distress. Conversely, some persons with developmental disabilities may be sensitive to normally benign stimuli such as touch, sounds, or abrupt changes in light, which create painful sensations. Empiric trials of pain medication may be necessary when assessment is uncertain.

Psychiatric and Behavioral Concerns

Persons with developmental disabilities have high rates of psychiatric problems. 34 The Diagnostic and Statistical Manual for Intellectual Disability (DSM-ID-2) can assist physicians in making psychiatric diagnoses in persons with intellectual disabilities who may have atypical signs and symptoms. 35 Generally, with accurate diagnosis, psychiatric conditions in patients with developmental disabilities can be managed effectively with the same range of medical, behavioral, and therapeutic modalities used to treat these conditions in the general population. 36

When assessing maladaptive behaviors, it is important to evaluate and treat the cause rather than merely suppress the behavior. Maladaptive behavior is often a manifestation of a medical or environmental problem, and is an opportunity to improve communication or to provide a better way to make sure the patient's needs are being met.

When interpreting behavior, it is important to consider the patient's ability to respond to potential mis-treatment or abuse. Some persons with developmental disabilities have had extensive educational and therapeutic interventions focused on improving their compliance with the expectations of authority figures such as parents and teachers.

Persons with developmental disabilities who have been taught to comply, especially those who need assistance with activities of daily living, may not have been encouraged or taught to set personal boundaries or to recognize or communicate when they are being mistreated or abused. These patients may be particularly vulnerable.

End-of-Life Care

Supported decision-making principles are particularly important when patients are facing a life-threatening illness. Terminal illness does not have to lead to a loss of autonomy, dignity, relationships, housing, or self-determination. Persons with developmental disabilities typically report higher quality of life than is perceived by others who are not disabled. 37 Awareness of unconscious bias and how it can influence goals of care conversations is paramount. 38 Family physicians can help hospital teams distinguish patients who have significant functional limitations but who are relatively healthy from patients who have serious, progressive illnesses. Family physicians are important advocates for their patients to access a full range of life-sustaining, curative, palliative care, and hospice services.

This article updates a previous article on this topic by Prater and Zylstra . 39

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Community-Engaged Research with People with Developmental Disabilities: A Conversation with Community Researchers about their Ethical Inclusion

• First Online: 30 September 2023

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• Brendan Durkin 18 ,
• Micah Fialka-Feldman 19 ,
• Jacob Myers 20 ,
• Ariel Schwartz 21 &
• Katherine McDonald 22  

Part of the book series: Philosophy and Medicine ((PHME,volume 146))

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This authors of this chapter, community and academic researchers, share a conversation about the importance of team dynamics in working with communities of people with developmental disabilities. The goal should be to create a genuine sense of belonging and that fosters respect and meaningful inclusion. The authors discuss how building strong personal relationships, providing disability accommodations, and following through on promises to co-create products that can positively impact people with developmental disabilities are some ways to foster this positive environment. These actions can improve accountability and are building blocks to ethical community-engaged research with communities of people with developmental disabilities.

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Web-Based Resources

Inclusive Research Network: https://www.inclusiveresearch.net/

The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE): https://aaspire.org/

Toolkit for Remote Inclusive Research: https://yell.ot.phhp.ufl.edu/research/engaging-in-research-during-emergencies/toolkit-for-remote-inclusive-research/

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Acknowledgements

Thank you to all of our research partners on the following teams: Project ETHICS, Research Ethics for All: Research Ethics Training for Patient Stakeholders with Intellectual and Developmental Disabilities, and the Inclusive Cool Cats (Developing the Pediatric Evaluation of Disability Inventory-Patient Reported Outcome, PEDI-PRO).

Funding and Conflicts of Interest

This work was supported in part by the Eunice Kennedy Shriver National Institute of Child Health & Human Development of the National Institutes of Health under Award Number R21HD075078 (PI McDonald), the Patient-Centered Outcomes Research Institute (PCORI; EASC-IDD-00301 Co-Leads McDonald and Schwartz), National Center Medical Rehabilitation Research, National Institute of Child Health and Human Development/National Institute Neurological Disorders and Stroke, National Institutes of Health K12 HD055931 (PI Kramer), and Eunice Kennedy Shriver National Institute of Child Health and Human Development of the National Institutes of Health R41HD090772, 2R42HD090772-03A1 (PI Kramer).

The content is solely ours and does not necessarily represent the official views of the National Institutes of Health.

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Durkin, B., Fialka-Feldman, M., Myers, J., Schwartz, A., McDonald, K. (2023). Community-Engaged Research with People with Developmental Disabilities: A Conversation with Community Researchers about their Ethical Inclusion. In: Anderson, E.E. (eds) Ethical Issues in Community and Patient Stakeholder–Engaged Health Research. Philosophy and Medicine, vol 146. Springer, Cham. https://doi.org/10.1007/978-3-031-40379-8_9

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Setting global research priorities for developmental disabilities, including intellectual disabilities and autism

Mark tomlinson.

Department of Psychology, Stellenbosch University, South Africa

M. Taghi Yasamy

Department of Mental Health and Substance Abuse, World Health Organization

Eric Emerson

Center for Disability Research, Lancaster University, United Kingdom and Centre for Disability Research and Policy, University of Sydney, Australia

Alana Officer

Department of Violence and Injury Prevention and Disability

Diane Richler

Inclusion International, Canada

Shekhar Saxena

The prevalence of intellectual disabilities (ID) has been estimated at 10.4/1000 worldwide with higher rates among children and adolescents in lower income countries. The objective of this paper is to address research priorities for development disabilities, notably intellectual disabilities and autism, at the global level and to propose the more rational use of scarce funds in addressing this under-investigated area.

An expert group was identified and invited to systematically list and score research questions. They applied the priority setting methodology of the Child Health and Nutrition Research Initiative (CHNRI) to generate research questions and to evaluate them using a set of five criteria: answerability, feasibility, applicability and impact, support within the context and equity.

The results of this process clearly indicated that the important priorities for future research related to the need for effective and efficient approaches to early intervention, empowerment of families supporting a person with developmental disability and to address preventable causes of poor health in people with ID and autism.

Conclusions

For the public health and other systems to become more effective in delivering appropriate support to persons with developmental disabilities, greater (and more targeted) investment in research is required to produce evidence of what works consistent with international human rights standards.

Introduction

In recent years, WHO has expanded working in the area of ID a and autism through extending partnerships at the global level with key international stakeholders. Mapping of policy and service provision for people with ID has been completed in 147 countries ( WHO, 2007a ) and both ID and autism have been included in WHO’s flagship mental health Gap Action Programme (mhGAP) ( WHO, 2008 , WHO, 2010 ). However, the more WHO has been determined to work in this area, the more the dearth of scientific knowledge that has relevance to the situation of people with ID and autism in low and middle income countries (LMIC) has become obvious ( Emerson et al., 2007 , Emerson et al., 2012 , WHO, 2011 ). One of WHO’s core functions is to shape the research agenda and stimulate the generation, translation and dissemination of knowledge ( WHO, 2007b ). Developing a global research agenda for ID and autism could help to guide research activities towards priority areas.

Existing epidemiological research suggests that these developmental disabilities contribute to a high amount of disability worldwide. The prevalence of ID has been estimated at 10.4/1000 worldwide with higher rates among children and adolescents and in LMIC’s ( Maulik et al., 2011 ). The median prevalence for pervasive developmental disorders (which include autism and Asperger’s syndrome) has been estimated at 6.2/1000 ( Elsabbagh et al., 2012 ) with no difference by geographic region. We need to know more about the prevalence, magnitude, impact, causes and correlates of these disabilities.

It is clear that people with disabilities, including people with ID and autism, face extensive and widespread discrimination and violations of their human rights and fundamental freedoms ( United Nations, 2003 , United Nations, 2006 , United Nations, 2011 , World Health Organization and the World Bank, 2011 ). They also, partly as a result of these violations, are vulnerable to experiencing extensive health inequalities ( Ouellette-Kuntz, 2005 ). According to WHO’s Atlas of global resources for persons with ID ( World Health Organization, 2007 ); most people with ID do not receive the services and supports they require. The global gap in services is accompanied and, in part, attributable to the absence of relevant scientific knowledge. At present, we simply do not know what the most cost effective services are and which services models are applicable in different contexts.

Research can make a significant contribution to improving the well-being of people with disabilities and to reducing the health inequalities faced by ‘vulnerable’ groups ( World Health Organization, 2008 , World Health Organization and the World Bank, 2011 , World Health Organization, 2011 ). However, most existing scientific knowledge is of ‘indirect relevance’ to people living with developmental disabilities in LMIC and has mostly been conducted in English speaking high income countries ( Emerson et al., 2007 ) a pattern of inequity that is repeated across many areas of health research ( Global Forum for Health Research, 2004 ). Much of the available knowledge is also insensitive to issues of gender, culture and ethnicity ( Yasamy et al., 2011 ). There is a dual need for increased research in LMIC countries, as well as more translational and implementation research to establish the extent to which the existing knowledge base from high income countries has relevance for LMIC. It is safe to say that current research in rich countries is not directly contributing to improving the situation in LMIC. Establishing global research priorities will help identify the appropriate balance between basic science, clinical research and public health research; a dire need in the area of ID and autism.

Methodology

The Child Health and Nutrition Research Initiative (CHNRI) methodology for setting priorities in health research investments was used to identify global research priorities for ID and autism ( Rudan et al., 2008 ). This methodology was adopted because: (a) it is a carefully developed and documented conceptual framework available in the public domain; (b) it has demonstrated usefulness in several previous exercises (including disability and mental health); and (c) it has expanding use by policy makers, large donors and international organizations ( Tomlinson et al., 2009b , Tomlinson et al., 2009a , Tomlinson et al., 2007 , Rudan et al., 2010 ). The method also has the advantage of supporting the participation of a range of stakeholders including those concerned with policy, with technical aspects of research, and with social and community issues. The CHNRI process is described below.

• The first step in the process was to gather a core group who oversaw the process. The authors of this paper formed the core group and provided technical input.
• Geographical focus; that there was adequate representation from different regions of the world including high income as well as LMIC.
• Gender representation: that gender equity was an important consideration
• Researcher/NGO interface: that the process was not dominated by academics/researchers and that there was representation from consumer organizations, civil society, NGOs, community based organizations, human rights groups and organizations of persons with disabilities and their families.
• Problem focus; the exercise will focus both on research related to mental disorders and psychosocial wellbeing/human rights of people with intellectual and developmental disabilities.

Scoring instructions - Firstly, always keep in mind the context. It is not possible to predict all outcomes of health research investments, and therefore the priorities should be set within a specific context, to influence a specific policy. Here, the context will be defined by space, time, population of interest. The space will be global, the time will be the next 5–10 years, and the area of interest on setting priorities for developmental disabilities including ID and developmental disabilities (including autism). Possible answers: Yes=1; No=0; Informed but undecided answer: 0.5; Not sufficiently informed: blank

• Library searches and snowball sampling was used to identify experts known for their work on development disabilities and representatives from civil society and service user organizations to independently generate research questions which they believed were priorities. Eligibility to participate to was based on meeting one of three criteria: (a) publication in the scientific literature on ID or autism; (b) being a consumer of ID or autism services; (c) being a member of an organization for persons with ID or autism. All participants fulfilled at least one of these criteria. This group of experts was then asked to generate no more than five research questions that they believed were a priority. This activity generated an initial list of 266 research questions.
• Questions were collated into a composite set of questions by eliminating overlap. The collation process was undertaken by the core group. This yielded 69 questions. Questions were grouped into a number of sections in order to ease the scoring process. These were Basic Science and Epidemiology (11 questions); Prevention, Promotion, Social Organisation, Public Attitudes & Beliefs (14 questions); Services & Supports – General (18 questions); Services & Supports - Parents and Families (5 questions); Services & Supports - Identification/Screening & Early Intervention (5 questions); Services & Supports – Education (5 questions); Services & Supports - Access to Health (6 questions); Services & Supports – Ageing (2 questions); Services & Supports – Interventions (3 questions). We used the term ‘developmental disabilities’ to cover both ID and autism or other pervasive developmental disabilities. Participants were asked independently to rate each of the 69 questions on each of the five criteria.
• Scores for competing research options were gathered and computed. In this way, the proposed options received a score on each of the five criteria ranging from 0–100%. They represent a measure of the collective opinion of the experts scoring independently. Surowiecki has shown how once each in individual in a rating process gets a right to express judgement that is treated equally as the judgement of any other individual, then the personal biases that those individuals bring into the process tend to cancel and dilute each other regardless who the participants are. What is left is information based on accumulated knowledge, lifetime experience and common sense of those who took part ( Surowiecki, 2004 ).

The library search and snowballing approach yielded a list of 138 possible members of the expert group, of these 72 (52%) agreed to participate. The expert group was geographically diverse, with 23% from Asia, 17% from Europe, 21% from North America, 12% from the Middle East, 9% from Africa, 9% from Latin America, 6% considering themselves international (WHO or international NGO’s), and 4% from Australasia. Sixty three participating members of the expert group contributed potential research questions.

The final list of 69 research questions was sent to the original group of 72 experts. Scoring took place over a three month period and was performed by 49 members; 68% of the original working group. The experts who completed scoring had almost a similar profile to that of the original larger group. They were equally geographically diverse, with 18% from Asia, 16% from Europe, 16% from North America, 8% from the Middle East, 12% from Africa, 10% from Latin America, 12% considering themselves international (WHO or international NGO’s), and 6% from Australasia. Experts were also asked to describe their area of expertise – in some cases they listed more than one. Primary areas of expertise were academic researcher (37%); health or allied health care professional (6%); basic scientist (4%); users (2%) (we define a user as a consumer of developmental disability, autism or ID services) non-governmental organization (29%); rehabilitation (4%); public health (14%) and education or special education (8%). In addition, 12% or respondents also stated that they were either the parent or immediate family member of a user.

The scoring of the 69 research questions resulted in the ranking of research topics based on the perceived likelihood that they would be answerable, feasible, have applicability and impact, obtain support or have an impact on equity. An overall research priority score (RPS) was calculated as the mean of each criteria score. Mean scores on the separate domains across the 69 items were all highly inter-correlated ( Table 1 ), while Table 2 shows the mean RPS scores by research domain.

Correlation (Pearson) Between Means Domain Scores and Total Score across Items

Mean RPS by Research Domain

Following Collins et al ( Collins et al., 2011 ) we grouped priority areas into five goals: advance identification, screening and early intervention; improve awareness, prevention, and promotive interventions; identify causes, prevalence, biomarkers, and risk and protective factors; transform health system to improve access and build human resource capacity; and improve support to parents and families. Illustrative research questions for each goal are presented in Table 3 (see Appendix 1 for the full ranking of all 69 research questions).

Priority research areas

The goal of advancing early identification, screening and early intervention achieved particularly high scores across the expert group. In this regard, there was a focus on how health systems can improve in early detection of developmental disabilities and how to operationally define and identify people with developmental disabilities. Linked to this was services and support related to identification, screening and early intervention and included questions on the availability, cost and efficacy of early intervention and rehabilitation programs for children with developmental disabilities. In terms of improving awareness and prevention (Goal B) prominent areas of focus were on the rights to health and education of children together with a strong emphasis on stigmatization, and the attitudes of both primary health care workers as well as the broader societal attitudes towards the care of people with developmental disabilities and how these vary across regions and countries. Training emerged as a strong theme – whether of primary health workers to reduce discrimination or establish how to train non-specialist health workers (community health workers for instance) to work with people with developmental disabilities. Providing support to the parents and families of children and people with developmental disabilities emerged as a particularly strong theme with a number of research questions relating to services and support research such as the most efficient ways of supporting and empowering parents/families of people with developmental disabilities and to how they can be most efficiently supported to provide a ‘healthy start’ in life for young children with or at high risk of developmental disabilities. Finally, the priorities recognise that there is much still to be learned in terms of identifying causes, prevalence studies and determining risk and protective factors. Examples of this included questions about the most common preventable causes of poor health among people with developmental disabilities and how these vary across regions and countries (and within countries) as well as questions concerning the most common preventable causes of poor health, social exclusion and nutritional deficiencies amongst children and people with developmental disabilities.

There is a dearth of scientific knowledge, other than that derived from basic science that has relevance to the situation of people with developmental disabilities in LMIC’s ( Emerson et al., 2007 , Emerson et al., 2008 , Emerson et al., 2012 , World Health Organization and the World Bank, 2011 ). We applied a proven method (CHNRI methodology) to identify global research priorities in this area ( Rudan et al., 2008 , Tomlinson et al., 2009b , Tomlinson et al., 2009a , Tomlinson et al., 2007 , Rudan et al., 2010 ). The results of this process clearly indicated that the crucial priorities for future research related to the need for effective and efficient approaches to early intervention and to address preventable causes of poor health among children with ID and/or. Another goal of research in this area was improving support to parents and families, training of health workers and non-specialists, and a strong focus on improving awareness. The main strengths of this priority setting exercise were: (1) the use of a proven methodology ( Rudan et al., 2008 , Tomlinson et al., 2009b , Tomlinson et al., 2009a , Tomlinson et al., 2007 , Rudan et al., 2010 ); (2) the involvement of a significant number of experts with good gender balance and geographical spread. The main limitations of the approach relate to validity of the CHNRI approach and potential sampling biases. While 63 experts participated generating the ‘research investment options’ that were rated, it is clearly impossible within such an exercise to attain comprehensive coverage of all possible research questions. As such, both the questions generated and the ratings allocated are likely to reflect any biases in the identification, sampling and participation of experts. The nature of the CHNRI methodology as applied in this instance would have limited the participation of experts who were not fluent in English and experts who have difficulty in manipulating complex information. These biases would be expected to have a particular impact in limiting the direct participation of ‘experts by experience’ (e.g., people with ID and autism, many family members). Nevertheless the project was successful in eliciting research questions from 63 experts and ratings from 49 experts from around the globe. The number of participants and the protection against potential bias provided by the CHNRI approach (e.g., by limiting interaction between participants) does reduce the probability that a similar group of experts would produce materially different results. As such, we believe that this research priority setting exercise provides an important contribution to establishing a global research agenda for ID and autism.

Finally, it is important to note that the priority setting exercise did not address the appropriateness of particular research methodologies or paradigms. As has been argued elsewhere, there is clearly a need to seek a balance between investment in basic science, clinical research, strategic research and action research ( Yasamy et al., 2011 ). Agencies such as WHO also support countries in developing relevant policies and plans and providing technical assistance for implementing them. The present exercise has provided grounds for the sound orientation of further research and service development particularly in poor resource settings. Finally, while the focus of this exercise was on LMIC, the aim is to provide guidance in setting research priorities globally. Different countries will certainly have different needs and we are not arguing for the same research questions to be employed within each country. We are also not suggesting that research conducted in rich countries has no relevance (through careful translational work) to LMIC.

In the area of ID and autism, there is also a particular need to increase investment in participatory or emancipatory research (i.e., research that is either co-produced with or controlled by organisations run by and for people with ID and/or autism). The reasons for this are twofold. First, increasing investment in participatory or emancipatory research is consistent with obligations under the UN Convention on the Rights of Persons with Disabilities for States Parties and international organisations to promote the inclusion of people with disabilities in all aspects of society. Second, a growing body of participatory or emancipatory research has documented the particular benefits that ‘insider knowledge’ or ‘experts by experience’ may bring to the development of research questions, methods and interpretation and dissemination of results ( World Health Organization and the World Bank, 2011 , Walmsley, 2010 , Ramcharan et al., 2004 ).

What was perhaps most striking about the results of the priority setting exercise was the emphasis placed on research questions relating to providing more effective and efficient support to children (specifically reflected in 9 of the top 25 priorities) and the importance of understanding/addressing the social exclusion, discrimination and disadvantage faced by people with ID and/or autism (specifically reflected in 11 of the top 25 priorities). In contrast, only three questions in the top 25 related to basic science and epidemiology (one of these being the identification of preventable causes of poor health). The prioritisation of these issues is consistent with two general trends in our understanding of disability and health. First, disability is increasingly being conceptualised as a human rights issue in that people with disabilities are at significantly increased risk of: (1) experiencing inequalities due to discrimination in health care, employment, education, and legal systems; (2) being subject to violations of their dignity; and (3) being denied autonomy (e.g., by being subjected to involuntary sterilization) ( World Health Organization and the World Bank, 2011 ). Second, the growing emphasis within health policy over that last decade on addressing global, regional and national inequalities in health has drawn attention to the general importance of addressing the broader social determinants of health associated with inequalities in access to power, wealth, education and employment ( World Health Organization, 2008 , World Health Organization, 2011 , Marmot and on behalf of the Commission on Social Determinants of Health, 2007 ). Within this context, a growing body of evidence has highlighted the importance of early child development in setting the scene for the emergence of health inequalities in later life ( Irwin et al., 2007 , Shonkoff, 2010 , Walker et al., 2011 ). Taken together, these trends stress the importance of taking a broader public health approach to understanding and addressing the health and well-being of people with ID and/or autism; a perspective that is notably lacking in current research investment. Interestingly, health system research was found to be the common priority across all previous global prioritization exercises for mental health research ( Yasamy et al., 2011 ). Interestingly, while many of the research priorities relate to LMIC many of the identified priorities apply equally to higher income countries.

Evidence generated by research is clearly necessary but not sufficient for a real change on the ground. For the public health and other systems to become more effective in delivering appropriate support to persons with developmental disabilities, existing health care and programmes need to be based on evidence of what works consistent with international human rights standards, accompanied by appropriate resource allocation (e.g. financial, training), and based on principles of accountability.

Acknowledgments

We would like to acknowledge the considerable time and effort that our expert group committed to this priority setting exercise.

Web Appendix 1: All Research question ranked by Total RPS

a ID’ is synonymous with the outdated and to many offensive ICD-10 term ‘mental retardation’

Conflict of Interest

Contributor Information

Mark Tomlinson, Department of Psychology, Stellenbosch University, South Africa.

M. Taghi Yasamy, Department of Mental Health and Substance Abuse, World Health Organization.

Eric Emerson, Center for Disability Research, Lancaster University, United Kingdom and Centre for Disability Research and Policy, University of Sydney, Australia.

Alana Officer, Department of Violence and Injury Prevention and Disability.

Diane Richler, Inclusion International, Canada.

Shekhar Saxena, Department of Mental Health and Substance Abuse, World Health Organization.

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Intellectual and Developmental Disabilities (IDD)

Approximately 6.5 million people are living with intellectual and developmental disabilities in the United States. (Centers for Disease Control and Prevention)

PCORI has supported 96 research studies and related projects with a focus on intellectual and developmental disabilities. (As of April 2024)

PCORI has awarded more than $129 million to fund research studies and other projects on intellectual and developmental disabilities. (As of April 2024)

2023 PCORI Annual Meeting Breakout Session Spotlight

Improving Mental Health for People With IDD Through Patient-Centered Research

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Dismantling Ableism Through Partner-Driven Health Research

Spotlights: ongoing studies and projects, a comparison of two school-based interventions to manage anxiety in autistic students.

Researchers are comparing the effectiveness of two school-based curriculums that show great promise in managing anxious symptoms for youth with autism: Facing Your Fears-School Based (FYF-SB) and Zones of Regulation (ZOR). Perspectives from students, caregivers and school providers are also examined.

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Project CONNECT seeks to bridge gaps in understanding, empowerment and empathy endemic to IDD research by creating a Research Community of Praxis through a series of Project ECHO sessions and the development of a shared language and vision for the future of IDD research.

Results that Support Better-Informed Decisions

Virtual evidence-based healthcare for underserved patients with down syndrome.

It can be challenging for a person with Down syndrome to access recommended care and preventive health screenings. Researchers tested a web-based platform for caregivers and found that it helped people with Down syndrome get personal wellness recommendations and receive services.

Preparing Individuals with Intellectual or Developmental Disabilities for Engagement in Research During Public Health Emergencies and Disasters

The project team hosted a Health Research Summit focused on building capacity for research engagement related to health disparities, health promotion and access to health services for people with IDD. Participants reviewed new resources, learned about barriers to inclusive research and identified approaches to increase inclusivity in research.

Improving Classroom Behaviors among Students with Symptoms of Autism Spectrum Disorder or Attention Deficit Hyperactivity Disorder

Researchers found that a new program, Unstuck and On Target, improves classroom behavior for students with attention deficit hyperactivity disorder and autism spectrum disorder.

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Antipsychotics for children with hyperactivity or disruptive disorders.

A comprehensive review of research studies weighed the benefits and harms of prescribing antipsychotic treatment for children diagnosed with attention deficit hyperactivity disorder or disruptive, impulse-control and conduct disorders.

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Evidence on mental health interventions in persons with intellectual disabilities – a scoping review.

A scoping review examines the evidence on interventions for mental health and challenging behaviors among all ages of people with IDD. The framework registries protocol has been developed, with the scoping review report to follow.

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Treatment for insomnia and other sleep disturbances among persons with developmental disabilities.

Many IDDs are associated with increased risk for sleep disorders, which can contribute to or exacerbate cognitive or behavioral issues and cause stress for people with IDD and their caregivers. This topic brief aims to identify existing evidence for interventions to treat sleep disorders in children or adults with IDD.

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Breaking Down Barriers for Children with Intellectual and Developmental Disabilities and Their Families

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Advancing Health Equity through Research on Transitions for People with IDD

2022 PCORI Virtual Annual Meeting October 26, 2022

Engaging People with Intellectual and Developmental Disabilities in Research

2021 PCORI Virtual Annual Meeting November 18, 2021

Additional Studies and Projects

View a selection of additional PCORI-funded research studies and Engagement projects that focus on intellectual and developmental disabilities.

Comparative Effectiveness of Palliative Surgery versus Additional Anti-Seizure Medications for Lennox-Gastaut Syndrome

Improving the health of parents and their adolescent and transition-age youth with idd, best practices to prevent covid-19 illness in staff and people with serious mental illness and developmental disabilities in congregate living settings, efficacy of pharmacologic management of adhd in children and youth with autism spectrum disorder, reflecting input from engaged communities.

PCORI engaged with communities offering diverse perspectives and backgrounds to understand how to identify research areas of interest and best answer questions important to these communities. For example, speaking with self-advocates (people with lived experience recognized as leaders in representing the interests of their community) was identified as an important way to engage with communities. As part of these engagement efforts, PCORI connected with caregivers, family members, advocacy groups, researchers, clinicians, administrators, payers and other organizations. These ongoing engagement efforts have resulted in areas of IDD research focus aligned to the needs and interests of people with IDD. Engagement will continue to inform PCORI's efforts and help identify the most pressing needs for people with IDD.

Healthcare topics of interest identified through community engagement are illustrated in Figure 1. Examples of evidence needs identified through community engagement included:

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• Challenge assumptions about ability to actively participate in care.
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IDD and Co-Occurring Mental Health Conditions (Virtual) Workshop Recording: October 21, 2021

Pcori stakeholder webinar on adhd in children and adolescents, pcori workshop on methodologic challenges in intellectual and developmental disabilities research: march 15, 2021 -- webinar recording, accelerating research on intellectual and developmental disabilities using pcornet ®.

A recent report sheds light on ways to accelerate patient-centered comparative clinical effectiveness research (CER) focused on IDD. This report is the result of an IDD workgroup convened by network partners of PCORnet ® , the National Patient-Centered Clinical Research Network. The IDD workgroup identified critical gaps and needs in current knowledge, and prioritized unanswered patient-centered CER questions which may be addressed by using PCORnet. The workgroup also developed recommendations to enhance infrastructure and preparatory activities necessary for future patient-centered CER that leverages PCORnet.

The PCORnet data query for IDD that informed the report characterizes patients at sites participating in PCORnet who would be eligible to participate in PCORnet ® Studies and other research related to IDD.

PCORnet ® , the National Patient-Centered Clinical Research Network , is a national resource funded by PCORI that brings together high-quality health data, patient partnership and research expertise to deliver fast, trustworthy answers that advance health outcomes.

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Intellectual and Developmental Disabilities (IDDs)

IDDs are a primary focus of NICHD’s research support. IDDs include disabilities and disorders that affect the nervous system, metabolism, and cell function and survival.

NICHD supports and conducts research to understand the causes and effects of IDDs and to help identify effective therapies for these disorders. NICHD invests heavily in supporting many areas of IDD research, including genetic and developmental causes of IDDs; ways that IDDs affect learning, communication, cognition, and memory; interactions of the family and community with individuals with IDDs; and effect of individual factors on social interactions, behavior, and emotions.

About Intellectual and Developmental Disabilities (IDDs)

What are idds.

IDDs are differences that are usually present at birth and that uniquely affect the trajectory of the individual’s physical, intellectual, and/or emotional development. Many of these conditions affect multiple body parts or systems.

Intellectual disability 1 starts any time before a child turns 18 and is characterized by differences with both:

• Intellectual functioning or intelligence, which include the ability to learn, reason, problem solve, and other skills; and
• Adaptive behavior, which includes everyday social and life skills.

The term "developmental disabilities" is a broader category of often lifelong challenges that can be intellectual, physical, or both. 2

"IDD" is the term often used to describe situations in which intellectual disability and other disabilities are present. 3

It might be helpful to think about IDDs in terms of the body parts or systems they affect or how they occur. For example 4 :

• Nervous system These disorders affect how the brain, spinal cord, and nervous system function, which can affect intelligence and learning. These conditions can also cause other issues, such as behavioral disorders, speech or language difficulties, seizures, and trouble with movement. Cerebral palsy, 5 Down syndrome , Fragile X syndrome , and autism spectrum disorders (ASDs) are examples of IDDs related to problems with the nervous system.
• Sensory system These disorders affect the senses (sight, hearing, touch, taste, and smell) or how the brain processes or interprets information from the senses. Preterm infants and infants exposed to infections, such as cytomegalovirus, may have reduced function with their eyesight and/or hearing. In addition, being touched or held can be difficult for people with ASDs.
• Metabolism These disorders affect how the body uses food and other materials for energy and growth. For example, how the body breaks down food during digestion is a metabolic process. Problems with these processes can upset the balance of materials available for the body to function properly. Too much of one thing, or too little of another can disrupt overall body and brain functions. Phenylketonuria (PKU) and congenital hypothyroidism are examples of metabolic conditions that can lead to IDDs.
• Degenerative Individuals with degenerative disorders may seem or be typical at birth and may meet usual developmental milestones for a time, but then they experience disruptions in skills, abilities, and functions because of the condition. In some cases, the disorder may not be detected until the child is an adolescent or adult and starts to show symptoms or lose abilities. Some degenerative disorders result from other conditions, such as untreated problems of metabolism.

The exact definition of IDD, as well as the different types or categories of IDD, may vary depending on the source of the information.

For example, within the context of education and the Individuals with Disabilities Education Act (IDEA), a law that aims to ensure educational services to children with disabilities throughout the nation, the definition of IDD and the types of conditions that are considered IDD might be different from the definitions and categories used by the Social Security Administration (SSA) to provide services and support for those with disabilities. These definitions and categories might also be different from those used by healthcare providers and researchers.

• Centers for Disease Control and Prevention. (n.d.). Intellectual disability fact sheet . Retrieved August 9, 2012, from https://www.cdc.gov/ncbddd/developmentaldisabilities/facts-about-intellectual-disability.html
• Centers for Disease Control and Prevention. (May 18, 2012). Cerebral palsy: Facts about cerebral palsy . Retrieved August 12, 2012, from http://www.cdc.gov/ncbddd/cp/facts.html

What are the signs of intellectual and development disabilities (IDDs)?

The signs of IDDs vary for particular conditions.

IDDs that are more severe may show up sooner. Some of the signs of IDD may include 1 , 2 :

• Sitting up, crawling, or walking later than other children of similar age
• Learning to talk later or having difficulty speaking
• Finding it hard to remember things
• Having trouble understanding the rules of social behavior
• Having difficulty "seeing" or understanding the outcomes of actions
• Having trouble solving problems

Developmental milestones can be monitored to identify delays (e.g., in walking or talking) that could indicate an IDD.

To learn more about developmental milestones, and milestones for different ages, visit the following websites:

• Centers for Disease Control and Prevention: http://www.cdc.gov/ncbddd/actearly/milestones/

How many people are affected/at risk for intellectual and developmental disabilities (IDDs)?

The exact number of people affected by IDDs is unknown. This is because IDDs cover a wide range of conditions, many of which are diagnosed several years after birth, rather than in newborns.

Current estimates suggest that 2% to 3% of children in the United States have some form of intellectual disability. 1

According to the Centers for Disease Control and Prevention (CDC), about 1 in 33 newborns (or 3%) in the United States are born with conditions related to problems in prenatal development. 2

For current statistics on the number of children born with specific types of these conditions, visit the CDC Data and Statistics webpage on birth defects.

• Centers for Disease Control and Prevention. (2008). Update on overall prevalence of major birth defects-Atlanta, Georgia, 1978-2005. Morbidity and Mortality Weekly Report, 57 , 1-5. Retrieved August 9, 2012, from http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5701a2.htm

What causes intellectual and developmental disabilities (IDDs)?

IDDs have a variety of causes. Some possible causes include (but are not limited to): 1 , 2 , 3

• Genetic mutations, additions, or deletions: for example, most cases of Rett syndrome are caused by a change in the Methly-CpG-binding Protein 2 (MECP2) gene
• Chromosome abnormalities, such as an extra chromosome or a missing chromosome: for example, Down syndrome results from having an extra copy or part of a copy of chromosome 21
• Exposure to certain substances while in the womb: for example, exposure to alcohol while in the womb can result in fetal alcohol spectrum disorder
• Infections during pregnancy: for example, infants whose mothers had cytomegalovirus during pregnancy may have hearing, vision, and neurological problems
• Problems during childbirth: for example, an umbilical cord that gets wrapped around a baby’s neck during delivery could cut off the supply of blood and oxygen to the brain resulting in IDDs
• Traumatic Brain Injury (TBI)
• Preterm birth

How do healthcare providers diagnose intellectual and developmental disabilities (IDDs)?

The diagnosis of an intellectual disability is typically made through a test of intelligence or cognition, often assessed by the range of scores on an Intelligence Quotient (IQ) test. 1 This type of test will help the health care provider examine the abilities of a person to learn, think, solve problems, and make sense of the world. 2 Average IQ test score is around 100, and 85% of children with an intellectual disability score in the range of 55 to 70. 3 More severe cases of intellectual disability generally have lower IQ scores.

Clinicians will also observe a child’s behavior for signs of a disability and assess adaptive behavior. Adaptive behaviors include coping skills and other behaviors that show how a child interacts with other people. 2 Health care providers can use this information to assess whether the individual has the skills needed to care for oneself and interact with others.

Some conditions that lead to IDDs may be diagnosed with a blood test, ultrasound, or another method, depending upon the condition. These tests may be conducted after birth or during pregnancy.

Newborn screening relies on testing blood samples taken from newborns while they are still in the hospital to help identify certain serious or life-threatening conditions, including some that lead to IDDs. Most tests use a few drops of blood obtained by pricking the infant’s heel. If a screening test suggests a problem, the infant’s doctor will follow up with further testing. 4

Prenatal Screening

Health care providers recommend that certain pregnant women, including those who are older than 35 years of age and those with a family history of certain conditions, have their fetuses tested prenatally, while still in the womb, for conditions that cause IDD. There are two main types of prenatal tests.

Amniocentesis 5

Amniocentesis is a test that is usually performed to determine whether a fetus has a genetic disorder. In this test, a doctor takes a small amount of fluid from the womb using a long needle. The fluid, called amniotic fluid, contains cells that have genetic material that is the same as the fetus’s genetic material. A laboratory grows the cells and then examines their genetic material for any problems. Some IDDs that can be detected with amniocentesis are Down syndrome and certain types of muscular dystrophy .

Because amniocentesis can cause a miscarriage in about 1 out of 200 cases, it is usually only recommended for pregnancies in which the risk of genetic disorders or other problems is high.

Chorionic Villus Sampling (CVS) 6 , 7

This test extracts cells from inside the womb to determine whether the fetus has a genetic disorder. Using a long needle, the doctor takes cells from the chorionic villi, which are tissues in the placenta, the organ in the womb that nourishes the fetus. The genetic material in the chorionic villus cells is identical to that of the fetal cells.

Like amniocentesis, CVS can be used to test for chromosomal disorders such as Down syndrome and other genetic problems. CVS can be done earlier in pregnancy than amniocentesis, but it is also associated with a higher risk of miscarriage—about 1 in 100 cases. Healthcare providers usually only recommend CVS in women who are at high risk for a condition or IDD.

• National Library of Medicine, Medline Plus. (2012). On newborn screening . Retrieved August 25, 2012, from https://medlineplus.gov/newbornscreening.html
• The Patient Education Institute. (2011, March 01). X-plain: Amniocentesis - Reference summary . Retrieved July 24, 2012, from https://medlineplus.gov/ency/presentations/100192_1.htm
• Simpson, J. L., & Otano, L. (2007). Prenatal genetic diagnosis. In S. G. Gabbe, J. R. Niebyl, & J. L. Simpson (Eds.), Obstetrics: Normal and problem pregnancies (5th ed.). New York, NY: Churchill Livingstone.
• American College of Obstetricians and Gynecologists. (2007). Invasive prenatal testing for aneuploidy. Washington, DC: Author. Retrieved September 14, 2014, from  https://pubmed.ncbi.nlm.nih.gov/18055749/

What should I do if I think my child has an intellectual and developmental disability (IDD)?

Many IDDs have no cure, but there are often ways to treat their symptoms. For example:

• Children with Down syndrome , Fragile X syndrome , Rett syndrome , and other IDDs can often benefit from therapeutic speech therapy, occupational therapy, and exercises to improve their gross- and fine-motor skills. They might also be helped by special education and attention at school and by the efforts of parents, educators, and healthcare practitioners to encourage social contact and communication. In addition, for children with Down syndrome, surgery can help correct heart defects that may be present.
• A variety of treatment options are available to help with the symptoms of autism spectrum disorders . Options may include behavioral, occupational, physical, and speech-language therapy. In addition, educational specialists can help guide the child’s school experiences.
• Treatment for hypothyroidism, or underactive thyroid, includes daily oral hormone treatment.
• The most effective treatment for phenylketonuria (PKU) is a special diet that carefully limits intake of the amino acid phenylalanine. People with PKU who begin this diet at birth or shortly thereafter develop normally and usually have no symptoms of PKU. It is important that individuals with PKU stay on the special diet through adolescence and that women with PKU continue the diet before and during pregnancy to promote the best health outcomes.

What are treatments for intellectual and developmental disabilities (IDDs)?

If you suspect that your child has an IDD, you should first talk with the child’s healthcare provider. If the healthcare provider thinks there might be a problem, you should then see a developmental pediatrician or another specialist.

You can also contact your local early-intervention agency (for children under the age of 3 years) or public school (for children aged 3 years or older). 1

In addition, your local school system can provide help in diagnosing a child’s condition and evaluating her/his educational needs as part of the Individuals with Disabilities Education Act (IDEA), which aims to ensure educational services to children with disabilities throughout the nation. 2

To learn more about the IDEA, visit:  https://www2.ed.gov/about/offices/list/osers/osep/index.html .

• U.S. Public Law 108-446, Individuals with Disabilities Education Improvement Act of 2004. (2004). Retrieved August 25, 2012, from http://www.gpo.gov/fdsys/pkg/PLAW-108publ446/html/PLAW-108publ446.htm

160 Disabilities Topics for Research Papers & Essays

Looking for interesting disability topics for a research paper or project? This field is hot, controversial, and definitely worth studying!

🏆 Best Disability Topics for Research Papers

👍 disability essay topics, 📑 research questions about disabilities, 🎓 good research topics about disabilities.

The disability study field includes the issues of physical, mental, and learning disabilities, as well as the problem of discrimination. In this article, we’ve gathered great disability essay topics & research questions, as well as disability topics to talk about. We hope that our collection will inspire you.

• Case Study of a Child with Intellectual Disability It is crucial to integrate the input of a learning coach into the school curriculum to encourage the participation of Meagan’s parents in his educational endeavors.
• Students With Disabilities in Higher Education Institutions Accommodations for students depend on the disability type that the student has, and whether the disability allows the student to get an accommodation in the institution.
• Poems with Disabilities by Jim Ferris This is good evidence for the argument of the need to eliminate the issue of ableism. Language evolves gradually, and countering the issue of ableism is a long-term goal.
• Managing Students With Disabilities Instructional issues that are encountered in education are those arising due to the inability of the students to acquire, maintain, and relate the skills that are learned in class to other settings within and outside […]
• The Problems of Children With Disabilities and Possible Ways of Solution It is very important for disabled people to be on the same level with others in the conditions that compensate the deviations in the development and constraints of the abilities in learning.
• Children With Learning Disabilities The following research questions will be used in achieving the objectives: What is the role of learning disabilities in affecting the ability of the students to learn?
• Sociocultural Barriers for People With Disabilities On the other hand, stigmatization, stereotyping and prejudice have been highlighted as the barriers to social inclusion of people with disabilities in society.
• Computer-Based Technologies That Assist People With Disabilities The visually impaired To assist the visually impaired to use computers, there are Braille computer keyboards and Braille display to enable them to enter information and read it. Most of these devices are very expensive […]
• Women, Development and Disabilities The mission of the organization is to enhance the voice of women in society and influence other organizations that advocate for women rights.
• Government Grants for People With Disabilities The paper will be based on the conditions of disabled people and the federal or state grants that they could receive in order to facilitate changes in their health and work.
• Learning Disabilities: Differentiating ADHD and EBD As for the most appropriate setting, it is possible to seat the child near the teacher. It is possible to provide instructions with the help of visual aids.
• Children With Disabilities in Education By the end of the experiment the student will demonstrate his ability to understand the information, to discuss it, and to reflect his ideas in writing.
• Employees With Disabilities and Their Workplace Behavior In H3, the authors found that employees with disabilities remained loyal and committed to work and were satisfied with their job.
• Ableism: Bias Against People With Disabilities People concerned with rights advocacy ought to ensure a facilitated awareness of the distressing impacts of ableism through the inclusion of the subject in private and public discussions.
• Defining Disabilities in Modern World Defining disability has not been easy due to the various opinions related to the understanding of the concept. Disability has significant impact on the society due to the relationships that exists between the individual and […]
• Mental Disabilities: Characteristics and Causes TBIs are caused by an impact of the head against a blunt object or from its penetration by a sharp object; it often results from vehicle accidents. Autism is a developmental disorder that influences the […]
• Adaptive Behavior Skills and Intellectual Disabilities Four assessment tools are important for identifying adaptive behavior and skills: the Adaptive Behavior Scale, the Scale of Independent Behavior, and the Vineland Adaptive Behavior Scale.
• Autism and Educational Process Owing to these adverse effects that can stem from autism and the shear prevalence of the condition in the country’s population, a lot of research effort has been dedicated to the early diagnosis and treatment […]
• Lawsuits Regarding College Students With Disabilities Abuse is one of the factors considered to have discouraged physically challenged students from pursuing their academic careers.
• Living with Disabilities from an Insider’s Perspective Additionally, Armendariz was able to use a prosthetic arm to assist with her disability which she recalled as being helpful before it led to severe negativity from her peers at the time.
• Grandparents Raising Grandchildren With Disabilities In the case of their absence, these grandparents worry about the well-being of their disabled grandchildren and the influence they have on other children.
• People With Disabilities in the Frida Movie After the accident, her father bought her a canvas that she would use for painting because she loved art and was an artist, helping her cope with her disability.
• Safety Evacuation for People with Disabilities First, before a disaster occurs, the government should be aware of the number of individuals in the scenario and keep track of them to verify the figures are correct.
• Individuals with Disabilities: Social Misconceptions One of the misconceptions I noticed is the community’s attitudes to people with disability. Community views about individuals with disabilities can also be impacted by features of the person with a disability unrelated to the […]
• Individuals With Disabilities: Prejudice and Discrimination I researched that people with persistent medical or physical disorders, such as cerebral palsy or multiple sclerosis, who have speech, articulation, or communication impairments, for example, are sometimes seen as having an intellectual deficiency. Corey […]
• Special Olympics and Profound Intellectual and Multiple Disabilities Together with partners, the Special Olympics aspires to improve the health outcomes for people with physical and mental disabilities to close the gap with the healthy population who are more advantaged in terms of access […]
• The Ohio Department of Developmental Disabilities Policy The paper outlines the proper policy and procedure of incident reporting and investigation and thus, provides how to become an agent for the Ohio Department of Developmental Disabilities and satisfy individuals receiving services.
• Ohio Department of Developmental Disabilities’ Staff Training Specifically, the introduction of the assessment modules for the evaluation of the staff members’ compliance with the set requirements will be enacted.
• The Quality of the Working Environment for Persons With Disabilities The progressive introduction of new practices more tolerant of the disabled will be carried out at every stage of the work cycle and in every segment of the corporation as a connected infrastructure.
• Developmental Disabilities: Best Practice and Support Family therapy and the creation of support groups seem to be an effective method for children with disabilities and their environment.
• Bronx Developmental Disabilities Council: Organization Assessment During events, council, and committee meetings, the organization provides printed materials with information on disability and the prevention of social distancing of people with disabilities.
• Assistive Technologies for Individuals with Disabilities A rehabilitation consultant will be able to recommend this equipment to people who are acutely worried about the inability to use a computer and the Internet to ensure a comfortable life.
• Smart Farms Hiring People with Disabilities Although Smart Farms is a non-profit organization and benefits from donations, the workers play their role in income generation by working on the farms and sales.
• Americans with Disabilities Act and Nursing Practice Acts such as the Americans with Disabilities Act affect not only the political and legal environment in a country but also the rights and responsibilities of nurses.
• Life of Individuals Dealing with Disabilities The child’s image hitting the t-ball also showcased a powerful issue, that disabled individuals should be treated similarly to other people and given equal opportunities to give them the chance to perform optimally.
• Partnership for People with Disabilities’ Mission The mission of this organization is to partner with stakeholders both in the intellectual and developmental disability community and other interested groups at Virginia Commonwealth University. The organization was founded in 1985 to better people’s […]
• The Experience of Parents of Children With Disabilities Enhancing support for the mental well-being of parents of children with a disability: developing a resource based on the perspectives of parents and professionals.
• Healthcare Disparities in People With Disabilities In addition to health care disparities, such as poor access to care, including preventive one, and dependency, people with disabilities also face higher morbidity and lack of insurance.
• Employment for People With Disabilities Accommodation is also considered to be a restructuring of work and the attraction of other personnel to help in adaptation – as it should have happened with Adele.
• Laws Protecting the Rights of People With Disabilities The aim of this essay is to research the law that protects the rights of people with disabilities in the context of sporting events.
• People With Disabilities in Society I think that these people are powerful and inspiring, as they prove to the world that it is possible to live life to the fullest with a disability.
• People With Disabilities and Social Work Moreover, there is a tendency towards the rise in the number of such people because of the deterioration of the situation and the growing number of environmental concerns.
• Alternate Assessments for Students With Learning Disabilities The problem is that many school districts experience difficulties with proposing adequate formative and summative assessments for those students who require special attention.
• People with Disabilities’ Problem of Employment Although truck driving can be a stressful job, it is not evident if it is true, and thus, it is important for John to experience the job-related himself and determine whether he can handle it. […]
• Living with Disabilities in the Nondisabled World A variety of laws, initiatives, and regulations are currently implemented to ensure simpler and less costly access to information resources and the functionality of a device.
• United Arab Emirates Schools: Students With Learning Disabilities The current UAE public school environment does not allow for the provision of the necessary skills due to the lack of a proper teaching strategy.
• Workplace and People With Disabilities The purpose of the research is to make coherent and accurate observations in regards to the usefulness of the given method in improving the overall attitudes of people and organizations toward people with disabilities.
• Career Counseling for People With Disabilities To sufficiently research, the issue of career counseling for individuals with disabilities in the academic press, a list of journals that offer such information was developed.
• Genetic Modification and Implicit Bias Against People With Disabilities There is also a factor of disabilities that are life-threatening to a child, or illnesses that may be able to be fatal within the first few years of life.
• Impact of Social Darwinism on the Perception of Human Disabilities In addition, connecting behavior such as the likeliness of criminality to genetics is incorrect and damaging not only to the individual but to a community and society as a whole.
• Music Therapy for Children With Learning Disabilities This review includes the evidence supporting music therapy as an effective strategy for promoting auditory, communication, and socio-emotional progression in children with ASD.
• Healthcare Professionals: Individuals With Developmental Disabilities The presentation provide an overview of relevant health related issues in individuals with developmental disabilities and how it relates to the group of professionals assigned.
• Protection for Persons With Disabilities and Their Service Animals Additionally, it must be trained to give assistance to a person with disability. Service animals that can be selected to assist persons with disability must be either a dog or a miniature horse.
• Death Penalty: Juveniles and Mental Disabilities Consequently, the Eight Amendment should dismiss the death penalty for this category and state laws must implement recommendations of the National Alliance on Mental Illness, the American Psychological Association, and the American Bar Association that […]
• The Prevalence, Effects and Challenges of Developmental Disabilities While the increase in the number of people with developmental disabilities is attributed to the rising numbers of the aging population, disabilities may arise in childhood and affect the entire lives of people.
• Community Disability Awareness Program: Elderly Women With Disabilities A measurable outcome in the program’s success will be a decline in the rate of crime related to elderly women with disabilities.
• The Understanding of Needs of People With Learning Disabilities Despite several problems in the overall design of the strategy that can be used to improve the nursing services for PLD, Drozd and Clinch make a very valid point by stressing the significance of a […]
• Addressing the Needs of People With Learning Disabilities As a student aiming at becoming a Nurse Practitioner, I am currently focusing on the exploration of the options for managing the work of the nursing staff, as well as seeking the opportunities for improving […]
• Discrimination Against Customers With Disabilities The role of the law is to regulate such cases and to provide necessary tools for both sides to prove their point of view.
• Elderly Women with Disabilities: Problems and Needs Despite the economic crisis, the cost of medical care has also increased due to the rise in the number of lawsuits filed against the physicians of the state.
• Relationship Satisfaction and Psychological Well-Being Among Greek People With Physical Disabilities In the light of this lack of knowledge, the present study attempts to explore the degree of relationship satisfaction in connection with the way handicapped people deal with the challenges of romantic involvement, as well […]
• Communication and People With Disabilities The bathrooms were close to the food court; moreover, there were special handle bars which helped to transfer to the commode and, at this, the height of the commode was almost the same as the […]
• Music Therapy as a Related Service for Students With Disabilities From a neuroscientific perspective, how would music intervention improve classroom behaviors and academic outcomes of students with ADHD as a way to inform policy-makers of the importance of music therapy as a related service?
• Problem Behaviors in Intellectual Disabilities Community The proposed quality designed study will evaluate the behavior of people with intellectual disabilities over a certain period of time and consequently conclude the primary triggers that influence ID people to demonstrate behavioral issues, including […]
• Law for People With Disabilities in California The family, the immediate environment of a person with disabilities, is the main link in the system of his or her care, socialization, the satisfaction of needs, support, and career guidance.
• The Resilience Experiences of People With Disabilities The focus of the study was on the participants’ lived experiences, as well as their attitudes towards certain aspects, so the use of interviews as a data collection method is justified.
• Literature Circles for Students With Learning Disabilities On the other hand, the affected individuals contend that the categorization should be removed to pave the way for the integration of assistances where all needs are attended without classification regardless of the student’s physical […]
• Students With Disabilities: Research Analysis In the process of undertaking this research and practical alignment, there is a misalignment in the inclusion of students with disabilities in the GE class.
• School Counselors for Students With Disabilities When the goals are set out, and the professional sphere is chosen, the counselor becomes responsible for the student’s preparation and reception of essential job skills as well as for the communication with the post-school […]
• The Specific Needs of Students With Physical Disabilities The research problem that will be the focus of the planned paper relates to the specific needs of students with physical disabilities or behavioral issues in general classrooms.
• Assistive Technology for Students with Disabilities The United Nations Convention on the Rights of people with disabilities proposes a raft of measures to be undertaken by states to promote the wellbeing of individuals with disabilities.
• Job for Individuals With Physical Disabilities For instance, when a new technology is about to be installed, it will be rational for a number of workers based on departments to be selected and taken through how to use the innovation, such […]
• Therapeutic Vests for Children With Disabilities The purpose of this review is to examine the available literature on the effectiveness of using therapeutic vests, weighted vests, and pressure vests on children with Autism spectrum disorders, Attention deficit disorder, Pervasive Development Disorder, […]
• An Audit of the Accessibility of the College of the North Atlantic-Qatar to Individuals With Physical Disabilities It should be noted that structural presentation of the paper is considered to be one of the most important elements of the paper because it allows following the logical thought of the research paper.
• Learning Disabilities and Communication Disorders The students are also being taken through research-based and special education programs and the determination of these disorders is done cooperatively between teachers and specialists like psychologists.
• Children With Disabilities: Supporting Student Behavior The comfortable atmosphere will help the children to attend the class and also provide a good way to mingle with the children with disabilities.
• Americans With Disabilities and Act Amendments Act to the ADA: The Main Issues and Comparison Moreover, the essence of the major amendments to the ADA is disclosed in the article using comparison and implications of those changes for the public use in the spheres of employment and human resources management […]
• Teaching Character Education to Students With Behavioral and Learning Disabilities The purpose of the study was to determine the effectiveness of character education programs implemented in schools on students with behavioral and learning disabilities.
• Plan of the Kickball Game That Involves the Students With the Disabilities While simulating the situation where one is in charge of the PE class, one needs to remember that disability is never inability, thus the students with the disabilities can participate in any games as well […]
• American With Disabilities Amendment Act The main intention of the Act is that civilians receiving benefits or services through the measures of local and state governments may not be differentiated on the fundamentals of the individual’s physical disabilities.
• Genetic Testing Under Americans With Disabilities Act There is nothing surprising in the fact that the genetically tested employees counted the testing as a violation of their human rights, and The Americans with Disabilities Act was adopted in 1990.
• Americans With Disabilities Act for Employers However, in practice, an employer could still legally discriminate against those with disabilities An employer is obligated to make reasonable accommodations for an employee or applicant if they are ‘otherwise qualified’ to perform the responsibilities […]
• Teaching Language to Students With Severe Disabilities The objective of this study is to find the different approaches that can be used in teaching phonics and the whole language to students with varied severe disabilities.
• Program Improvement: Developmental and Intellectual Disabilities The government has been keen to present specific resources and support systems that can support the educational and career goals of these individuals.
• Daily Living Skills Training for Individuals With Learning Disabilities Teaching individuals with physical and mental disabilities the life skills needed to compensate for their disadvantages are considered to be the key factor to ensuring a relatively safe, functional, and happy life for those individuals.
• Teaching Adaptive Behavior Skills to Children Suffering From Intellectual Disabilities in the Kingdom of Saudi Arabia This theoretical framework will contribute to the validation of the perspectives used by the teachers to construct their system of beliefs regarding the process of teaching ABS to students with ID.
• Life Stages of People with Learning Disabilities In order to proceed with the observation, it is necessary to identify the normal issues likely to be encountered by the representatives of both groups.
• Individuals With Intellectual Disabilities in the Workplace Intellectual disability puts a strain on an individual’s ability to have a social life and communicate with other human beings due to the fact that their capability of adapting is limited to a certain extent.
• Lifespan Development and Learning Disabilities in Childhood Parents in this situation would most likely select the authoritative parenting style to manage children because they are left to make their own choices under a guided framework.
• Natural Supports for Individuals With Disabilities Natural supports can be defined as personal connections and associations that improve the quality of a person’s life; these primarily include family relationships and friendships and constitute “the first line of supports, followed by informal […]
• Ican Bike for Individuals With Disabilities I think iCan Bike is a very good initiative that targets a vulnerable population with a plethora of special needs and relies on the community in order to deliver the results.
• Children With Disabilities and Parental Mistreatment The information in the article is helpful for parents of children with disabilities and other parents since it assists them in appreciating the significance of each parent’s education in lessening the incidence of child disability.
• School Counselor Job for People With Disabilities A school counselor that faces the risk of having a cardiovascular incident is challenged by the possible implications of the disease that could have an adverse impact on the overall practice and well being. Therefore, […]
• Americans With Disabilities in Criminal Justice Agencies Since the legislation is relatively new, the process of the change requires such guidelines given the lack of an appropriate number of the best practices for the time being.
• Rights of Parents of Students With Disabilities Trying to fix the problem, parents should understand that the only way they are to behave is the move in the direction of a correct education of their child.
• Strategies for Teaching Students With Mild Disabilities The good thing about having a child with a disability in the family is that it teaches everyone in the household to be patient. The greatest problem I have encountered in having a child with […]
• Learning Disabilities and Memory Disorders Large amounts of phenylalanine in the blood will result in complications of the neurons in the central nervous system referred to as myelinization of the cerebral hemispheres.
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Longitudinal Data Projects: 5 Key Questions

For almost 40 years, three ACL-funded longitudinal data projects have collected vital information about the services provided to people with intellectual and developmental disabilities (I/DD) — national data used to identify specific areas of need, to help policymakers and other stakeholders make informed decisions. Over several decades, our grantees have worked to make the data more understandable and usable for people with I/DD, their families, and the public. In 2024, they published critical information, in the format of "5 Questions," that helps to tell the story of progress made through the expansion of the home and community-based services that support people with I/DD living, working, and fully participating in their communities.

Each of the three longitudinal data project grantees is a University Center on Excellence in Developmental Disabilities (UCEDD), part of national network of 68 university programs whose core function is to provide preservice preparation, support services (including technical assistance, community education, and direct services), research, and information dissemination. Their core funding is administered by ACL; however, UCEDDS leverage that funding to partner with other federal, state, and local resources. There is at least one UCEDD in every US state and territory. 

Projects at a Glance

The National Residential Information Systems Project (RISP) , run by the University of Minnesota's Institute on Community Integration, gathers annual statistics and analyzes trends in Medicaid, state, and locally funded residential and in-home supports. RISP administers an annual survey and publishes an annual report.

StateData is a project of ThinkWork! at the Institute for Community Inclusion at UMass Boston. It assesses the employment and economic status of people with disabilities and the effectiveness of state and vocational rehabilitation agencies in promoting full inclusion through employment and other community activities.

The State of the States in I/DD Project , run by the University of Kansas, studies trends in I/DD services in all 50 states, DC, and the nation as a whole. The project identifies data about community services and supports, public and private institutions, fiscal expenditures in states, and demand for services and supports.

The 5 Questions

RISP's 5 Questions

• How many people have I/DD?
• How many people with I/DD get paid supports?
• Where do people who get paid supports live?
• How do the places people live differ by age and by state?
• How have the places people with I/DD live changed?

State of the States' 5 Questions

• How much money do states spend on people with I/DD?
• What technology supports do people with I/DD get?
• How has spending (fiscal effort) changed over time?
• How much do states pay for different kinds of services?
• How does spending differ across states?

StateData's 5 Questions

• How many people with I/DD have competitive integrated jobs?
• How do competitive integrated employment outcomes compare with people with and without disabilities?
• How has participation in state I/DD agency employment and day services changed over time?
• How does participation in integrated employment services differ by state?
• How many people with I/DD find jobs with help from state vocational rehabilitation agencies each year?

Last modified on 05/23/2024

Key differences in brain development between autistic boys and girls

Study shows more rapid rate of cortical thinning in autistic females across childhood.

A new study led by UC Davis researchers finds widespread differences in brain development between autistic boys and girls ages 2-13. The study, published recently in Molecular Psychiatry , found sex-specific changes in the thickness of the outer layer of the brain, called the cortex.

The findings are notable because so few studies have addressed cortical development in autistic girls, who are diagnosed with autism less often than males. Nearly four males are diagnosed with autism for every one female.

"It is clear that this sex bias is due, in part, to underdiagnosis of autism in females," said Christine Wu Nordahl, a professor in the Department of Psychiatry and Behavioral Sciences and the UC Davis MIND Institute and a senior author on the paper. "But this study suggests that differences in diagnosis are not the full story -- biological differences also exist."

The brain's outer layer, the cortex, is made up of distinct layers comprised of millions of neurons. These fire in sync together, allowing us to think, learn, solve problems, build memories, and experience emotions. Until about age 2, the cortex rapidly thickens as new neurons are created. After this peak, the outer cortical layer thins. Previous studies have found that this thinning process is different in autistic children than non-autistic children, but whether autistic boys and girls share the same differences had not been examined.

"It's important to learn more about how sex differences in brain development may interact with autistic development and lead to different developmental outcomes in boys and girls," explained Derek Andrews, lead author on the study and an assistant project scientist in the Department of Psychiatry and Behavioral Sciences and at the MIND Institute.

A changing cortex in childhood

The research team studied the brain scans of 290 autistic children -- 202 males and 88 females, and 139 non-autistic, typically developing individuals -- 79 males and 60 females. They used sex assigned at birth to categorize the children.

All participants were in the MIND Institute's Autism Phenome Project (APP), one of the largest longitudinal autism studies in the world. The project includes the Girls with Autism Imaging of Neurodevelopment (GAIN) study, launched to increase the number of females represented in research. The researchers took MRI scans at up to four time periods between the ages of 2 and 13.

They found that at age 3, autistic girls had a thicker cortex than non-autistic girls of the same age, comprising about 9% of the total cortical surface. Differences in autistic males when compared to non-autistic males of the same age were much less widespread.

In addition, when compared to males, autistic females had faster rates of cortical thinning into middle childhood. The cortical differences were present across multiple neural networks.

"We found differences in the brain associated with autism across nearly all networks in the brain," Andrews said.

He noted that it was a surprise at first that the differences were greatest at younger ages. Because autistic girls had a more rapid rate of cortical thinning, by middle childhood, the differences between autistic males and females were much less pronounced.

"We typically think of sex differences as being larger after puberty. However, brain development around the ages of 2-4 is highly dynamic, so small changes in timing of development between the sexes could result in large differences that then converge later," Andrews explained.

The importance of long-term studies of both sexes

These findings make it clear that longitudinal studies that include both sexes are necessary, Nordahl said.

"If we had only looked at boys at age 3, we may have concluded that there were no differences. If we had both boys and girls, but only investigated differences at 11 years of age, we may have concluded that there were very few sex differences in the cortex. We needed to follow both boys and girls across development to see the full picture," she explained.

This was why Nordahl, who now directs the APP, launched the GAIN study in 2014. "The APP had a wonderfully large sample of about 150 autistic boys, but only about 30 autistic girls. This was too few autistic girls to really examine how they might be similar or different to boys, so we worked to increase the representation of autistic females in our research," she said.

GAIN is unique, and Andrews said he hopes other researchers will follow suit in including more autistic girls in autism research. "Autistic females represent about 20% of the autistic population. Any successful effort to understand autism will need to include autistic females."

Co-authors on the study include Kersten Diers and Martin Reuter of the German Center for Neurodegenerative Diseases; Devani Cordero of Massachusetts General Hospital; and Joshua K. Lee, Danielle J. Harvey, Brianna Heath, Sally J. Rogers, Marjorie Solomon and David Amaral of UC Davis.

The study was supported by the National Institute of Mental Health (R01MH127046, R01MH128814 and R01MH103284), the National Institute of Child Health and Development (P50 HD093079) and the MIND Institute Intellectual and Developmental Disabilities Research Center (P50 HD103526)

• Children's Health
• Psychology Research
• Nervous System
• Staying Healthy
• Gender Difference
• Learning Disorders
• Child Development
• Visual cortex
• Excretory system
• Electroencephalography
• Psychometrics
• Neocortex (brain)
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Story Source:

Materials provided by University of California - Davis Health . Original written by Marianne Russ Sharp. Note: Content may be edited for style and length.

Journal Reference :

• Derek S. Andrews, Kersten Diers, Joshua K. Lee, Danielle J. Harvey, Brianna Heath, Devani Cordero, Sally J. Rogers, Martin Reuter, Marjorie Solomon, David G. Amaral, Christine Wu Nordahl. Sex differences in trajectories of cortical development in autistic children from 2–13 years of age . Molecular Psychiatry , 2024; DOI: 10.1038/s41380-024-02592-8

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New funding will extend self-advocacy program for Chinese American families of children with developmental disabilities

• May 15, 2024
• Ann Kellett
• Community , Community Impact , Public Health , Show on VR homepage

A researcher with the Texas A&M University School of Public Health has been awarded $780,250 to extend her advocacy work with Chinese American families that have children with developmental disabilities into the Houston metroplex and the seven-county Brazos Valley region of Texas about 90 miles northwest of Houston.

Developmental disabilities are characterized by physical and intellectual impairment, including language use and/or behavioral functioning, as seen in conditions such as attention-deficit/hyperactivity disorder, autism spectrum disorder, cerebral palsy and Down syndrome. They emerge during a person’s development, are often permanent and may affect the individual’s ability to live independently.

“This project is important because with a population of more than 7 million, the Houston-Woodlands-Ford Bend metro area has the largest population of Chinese Americans with developmental disabilities in the state, and this cohort also is significantly underserved in the Brazos Valley,” said Lei-Shih “Lace” Chen , PhD, a professor of health behavior and the project’s principal investigator.

Chen noted that Asian Americans are the fastest-growing racial/ethnic group in the United States, with Chinese Americans being the largest Asian American subpopulation. In addition, more than 60 percent of this cohort are immigrants, and nearly 40 percent have limited English proficiency.

“As the mother of a child with developmental disabilities, I know the challenges that families face,” Chen said. “As an immigrant from Taiwan, which is deeply influenced by Chinese culture, I also know that traditional Chinese culture too often stigmatizes disabilities. In addition, the Chinese value of maintaining social harmony discourages advocacy of, or self-advocacy by, those affected.”

Chen will use the five-year grant from the Texas Council for Developmental Disabilities to provide culturally and linguistically appropriate support and advocacy/self-advocacy training for 250 Chinese Americans with developmental disabilities and their family members in the Houston-The Woodlands-Ford Bend metro area and also in the Brazos Valley. She received funding for a developmental disabilities-related project in the Brazos Valley last year.

Participants in the new project will learn how to integrate their new advocacy skills into their unique situations with help from Chinese American community health workers whom Chen and her team trained through a past project funded by the Cancer Prevention and Research Institute of Texas.

Finally, 20 Chinese Americans with developmental disabilities and their family members will be trained to become Texas Department of State Health Services-certified community health workers . Those who are certified will be pioneer advocate leaders who will actively lead and engage in community-based education and services for Chinese American communities with developmental disabilities.

This will be one of the first Mandarin-language programs in Texas to build advocacy and self-advocacy capacity for Chinese Americans with developmental disabilities and their family members, Chen said.

“I have heard many heartbreaking and frustrating stories of Chinese Americans who didn’t get help because they didn’t know where to find it or that they had rights to it,” Chen said. “I am very excited about this project and the opportunity for these voices finally to be heard.”

Media contact: [email protected]

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