Clinical Care Bibliography
NOTE: In England “learning disability” is the term used for what is called “intellectual disability” or “mental retardation” in the USA. In England “learning difficulty” is the term used for what is called “learning disability” in the USA. In the field of Developmental Medicine, “dual diagnosis” refers to intellectual disability combined with mental illness.
Ailey SH, Marks BA, Crisp C, Hahn JE. Promoting sexuality across the life span for individuals with intellectual and developmental disabilities. Nurs Clin North Am. 2003;38(2)229-252.
Alexander LM, Bullock M, Maring JR. Challenges in the recognition and management of age-related conditions in older adults with developmental disabilities. Top Geriatri Rehabil. 2008;24(1):12-25.
Altarac M, Saroha E. Life-time prevalence of learning disability among US children. Pediatrics. 2007;119:S77-S83.
Ashman L, Duggan L. Interventions for learning disabled sex offenders. Cochrane Database of Systematic Reviews 2008, Issue 1. Art. No.: CD003682. DOI: 10.1002/14651858.CD003682.pub2. No trials found.
Beange H, McElduff A, Baker W. Medical disorders of adults with mental retardation: A population study. Am J Ment Retard. 1995;99:595-604.
Beavis J, Kerr M, Marson AG. Pharmacological interventions for epilepsy in people with intellectual disabilities. Cochrane Database of Systematic Reviews 2007, Issue 3. Art. No.:CD005399.
Biersdorff, KK. Incidence of significantly altered pain experience among individuals with developmental disabilities. Am J Ment Retard. 1994;98(5):619-31.
BoyleCA, Decoufle P, Yeargin-Allsopp M. Prevalence and health impact of developmental disabilities in US children. Pediatrics. 1994;93(3):399-403.
Braam W, Didden R, Smits M, Curfs L. Melatonin treatment in individuals with intellectual disability and chronic insomnia: a randomized placebo-controlled study. J Intllect Disabil Res. 2008;52(3):256-64. N=51; 5 mg melatonin mixed with carboxymethylcellulose in a fast release tablet at 7 pm vs. placebo. Based on diaries of observations, melatonin was highly effective for decreasing sleep latency, advancing sleep onset and total sleep time.
Brady R, Lamb V. Assessment, intervention and prevention of falls in elders with developmental disabilities. Top Geriatri Rehabil. 2008:24(1):54-63.
Breast Health Access for Women with Disabilities (BHAWD). Breast health and beyond for women with disabilities: a provider’s guide to the examination and screening of women with disabilities. (2003) AltaBatesSummitMedicalCenter, Rehabilitation Services Department. Practical information geared towards clinicians. Has materials that would be helpful for curricula/training.
Brown MC, Censullo M. Supporting safe transitions from home to healthcare settings for individuals with intellectual disabilities. Top Geriatri Rehabil. 2008:24(1):74-82.
Brylewski J, Duggan L. Antipsychotic medication for challenging behaviour in people with learning disability. Cochrane Database of Systematic Reviews 2004, Issue 3. Art. No.: CD000377. There is no randomized controlled trial-based information that suggests antipsychotic medication is either helpful or harmful for adults with learning disability and challenging behaviour.
Caldwell P, Stevens P. Creative Conversations (DVD): Communicating with people with profound learning disabilities. Pavillion. DVD (35 mins approx) with accompanying guidance notes. Available at: This DVD shows how Intensive Interaction is used to find ways of communicating with people who have multiple and profound intellectual disabilities, enabling them to express their feelings as well as their needs. It shows care staff and family caregivers learning to use a number of simple Intensive Interaction techniques with four adults.
Care Services Improvement Partnership. (2007) Positive Practice Positive Outcomes: A Handbook for Professionals in the Criminal Justice System working with Offenders with Learning Disabilities. Available at: Accessed 08/20/09.
Carnaby S. Developing good practice in the clinical assessment of people with profound intellectual disabilities and multiple impairment. Journal of Policy and Practice in Intellectual Disabilities. 2007;4(2):88-96.
Chadwick DD, Jollifee J. A descriptive investigation of dysphagia in adults with intellectual disabilities. J Intllect Disabil Res. 2009;53(1):29-43. Cerebral palsy, increased physical disability and cognitive impairment were associated with dysphagia. Prevalence 8.15% in a sample of adults with ID living in community settings, referred for assessment for eating and drinking.
Cheslock MA. Barton-Husley A, Romski M, Sevcik RA. Using a speech-generating device to enhance communicative abilities for an adult with moderate intellectual disability. Intellect Dev Disabil. 2008;46(5):376-86. Case study.
Cohen, WI, ed. Health care guidelines for individuals with Down Syndrome: 1999 revision. (1999) Down Syndrome Research Foundation, available at:
Committee on Children with Disabilities, AmericanAcademy of Pediatrics. The pediatrician’s role in development and implementation of an individual education plan (IEP) and/or an individual family service plan (IFSP). Pediatrics. 1999;104(1):124-7.
Cooper SA, Smiley E, Allan LM, Jackson A, Finlayson J, Mantry D, Morrison J. Adults with intellectual disabilities: prevalence, incidence and remission of self-injurious behavior, and related factors. J Intllect Disabil Res. 2009;53(3):200-16.
Cooper SA, Smiley E, Jackson A, Finlayson J, Allan L, Mantry D, Morrison J. Adults with intellectual disabilities: prevalence, incidence and remission of aggressive behavior and related factors. J Intllect Disabil Res. 2009;53(3):217-32. Aggressive behavior is common among adults with ID, but more than a quarter remit within short to medium term.
Cooper SA, Morrison J, Melville C, Finlayson J, Allan L, Martin G, Robinson N. Improving the health of people with intellectual disabilities: outcomes of a health screening programme after 1 year. J Appl Research Intellect Disabil. 2006;50(9):667-77.
Costello H. Nick Bouras. Assessment of mental health problems in people with intellectual disabilities. Isr J Psychiatry Relat Sci. 2006;43(4):241-251.
Davidson PW, Prasher VP, Janicki MP, eds. Mental Health, Intellectual Disabilities and the Aging Process. Blackwell Publishing, Lds:Oxford; 2003. In three part series from the International Association for the Scientific Study of Intellectual Disabilities.
Deb S. Clarke D, Unwin G. (2006) Using medication to manage behavior problems among adults with a learning disability: Quick reference guide. London: Mencap. Available at Accessed 8/20/09. Expert consensus based.
Diagnosing Challenging Behavior: Medical and Environmental Causes. DVD. 1992. 12 min. Teaches a scientific approach toward identifying the underlying reasons for challenging behavior. Discusses how to detect patterns of behavior to arrive at sensible treatment interventions. Available from Program Development Associates; 1-800-543-2119.
Doostan D. Wilkes M. Treating the developmentally disabled. Best Practice: Evidence Based Case Review. West J Med. 1999;171:92-96.
Draheim CC. Cardiovascular disease prevalence and risk factors of persons with mental retardation. Ment Retard Dev Disabil Res Rev. 2006;12:3-12.
Elliott, GR. Medicating Young Minds: The Essential Guide to Medications and Treatment Options. New York:Lynn Sonberg Book Associates;2006. Written for lay audience.
Ergun U, Say B, Ozer G, Yildirim O, Kocaturk O, Konar D, Kudiaki C, Inan L. Trial of a new pain assessment tool in patients with low education: the full cup test. Int J Clin Pract. 2007;102(11):2448-57.
Esbensen AJ, Seltzer MM, Greenberg JS. Depressive symptoms in adults with mild to moderate intellectual disability and their relation to maternal well-being. Journal of Policy and Practice in Intellectual Disabilities. 2006;3(4):229-37.
Evenhuis H, Henderson CM, Beange H, Lennox N, Chicoine B. Healthy ageing—adults with intellectual disabilities: physical health issues. J Appl Research Intellect Disabil. 2001;14:175-94.
Evenhuis HM, Nagtzaam JMD (eds). (1997/1998) International Consensus Statement on Early detection of Visual and Hearing Impairment in People with Intellectual Disabilities. IASSID. Available at Screening recommendations. Accessed 9/1/09.
Evenhuis HM, Sjoukes L, Koot HM, Kooijman. Does visual impairment lead to additional disability in adults with intellectual disabilities? J Intllect Disabil Res. 2009; 53(1):19-28.
Felce D, Kerr M, Hastings RP. A general practice-based study of the relationship between indicators of mental illness and challenging behavior among adults with intellectual disabilities. J Intllect Disabil Res. 2009;53(3):243-54.
Fletcher, R., ed. Diagnostic Manual—Intellectual Disability: A textbook of diagnosis of Mental Disorders in Persons with Intellectual Disability. Kingston, NY:NADD Press; 2007. This was put out by the National Association for Dual Diagnosis and the American Psychiatric Association.
Frey GC, TempleVA, Stanish HI. Introduction: preventive health and individuals with mental retardation. Ment Retard Dev Disabil Res Rev. 2006;12:1-2.
Functional Assessment. DVD 13. min. 1992. Teaches how to recognize indicators for the four most common reasons for challenging behavior. Available from Program Development Associates. 1-800-543-2119.
Gardner, WI, Dosen A, Griffiths DM, King R. Practice Guidelines: For Diagnostic, Treatment and Related Support Services for Persons with Developmental Disabilities and Serious Behavior Problems. United States of America: NADD Press; 2006.
Griffiths DM, Richards D, Fedoroff P, Watson SL. Ethical Dilemmas: Sexuality and Developmental Disability. Kingston, NY: NADD Press;2002.
Gunther D, Diekema D. Attenuating growth in children with profound developmental disability. Arch Pediatri Adolesc Med. 2006;160:1013-1017
Hall JM, Thomas J. Promoting physical activity and exercise in older adults with developmental disabilities. Top Geriatri Rehabil. 2008;24(1):64-73.
Hallum A. Disability and the transition to adulthood: issues for the disabled child, the family and the pediatrician. Curr Probl Pediatr. 1995;25:12-50.
Hammel J, Jones R, Smith J, Bodine C, Johnson M. Environmental barriers and supports to the health, function, and participation of people with developmental and intellectual disabilities: report from the state of the science in aging with developmental disabilities conference. Disabil Health J. 2008;1(3):143-149.
Hankins GD, Erickson K, Zinberg S, Schulkin J. Neonatal encephalopathy and cerebral palsy: a knowledge survey of Fellows of the American College of Obstetricians and Gynecologists. Obstet Gynecol. 2003;101(1):11-7.
Hanson, RH, Wieseler NA, Lakin C, eds. Crisis: Prevention & Response in the Community. WashingtonDC: American Association on Mental Retardation; 2002. Describes a variety of model programs.
Heller T. Report of the state of the science in aging with developmental disabilities: charting lifespan trajectories and supportive environments for healthy community living symposium. Disabil Health J. 2008;1(3):127-130.
Heller T, Caldwell J, Factor A. Aging family caregivers: policies and practices. Ment Retard Dev Disabil Res Rev. 2007;13:136-142.
Heller T, Factor A. Family support and intergenerational caregiving: report from the state of the science in aging with developmental disabilities conference. 2008. Disabil Health J. 2008;1(3): 131-135.
Hemmings CP. Community services for people with intellectual disabilities and mental health problems. Curr Opin Psychiatry. 2008;21(5):459-62. Review.
Henniquin M, Morin C, Feine CM. Pain expression and stimulus localization in individuals with Down’s syndrome. Lancet. 2000;356:1882-87.
Hertz-Picciotto I, Delwiche L. The rise in autism and the role of age at diagnosis. Epidemiology 2009;20:84-90. Well done study from the MIND Institute of autism epidemiology in California based primarily on CDER data but taking into account a variety of possible confounders.
Hodgdon LA. Visual Strategies for Improving Communication: Practical Supports for School and Home. QuirkRoberts Publishing: Troy, MI, 1995. Classic book in its 14th reprinting. Very useful, practical guide to using visuals for communication.
Holt G, Hardy S, Bouras N. Mental Health in Learning Disabilities: a training resource. Multimedia CD-Rom in ringbinder with introductory notes and dividers plus handbook. Pavillion. Available at: (Note that learning disability is the British term for intellectual disability).
Hughes, EE. The Little Book of Practical Solutions: A Common Sense Guide to Understanding and Preventing Problem Behavior. United States of America: NADD Press; 2006. Written for a lay audience and for caregivers.
Humphries K, Traci MA, Seekins T. Nutrition and adults with intellectual or developmental disabilities: systematic literature review results. Intellect Dev Disabil. 2009;47(3):163-85.
Hylkema T, Vlaskamp C. Significant improvement in sleep in people with intellectual disabilities living in residential settings by non-pharmaceutical interventions. J Intllect Disabil Res. 2009;53(8):695-703.
Iacono T, Sutherland G. Health screening and developmental disabilities. Journal of Policy and Practice in Intellectual Disabilities. 2006;3(3):155-63.
Improving Transition Outcomes Project (ITOP) Interagency Council. Improving Transition Outcomes for Youth with Disabilities in San Francisco. Improving Transitions Outcome Project 2006-2011 Draft Strategic Plan. October 2006. Available at: Accessed 9/1/09. Includes goal for access to full range of culturally-competent and convenient medical, dental and behavioral health services. Strategy C10 and C11 call for support of a clinic that provides behavioral health services and case management support to youth and young adults with disabilities who have behavioral health needs and support for a public health clinic that specializes in the medical needs of youth and young adults with disabilities.
Jain S. Care of patients with disabilities: an important and often ignored aspect of family medicine teaching. Fam Med. 2006;38(1):13-5.
Jain S. Teaching learners to care for children and youth with special health care needs. Fam Med. 2007;39(2):85-7.
Janicki MP, Dalton AJ, Henderson CM, Davidson PW. Mortality and morbidity among older adults with intellectual disability: health services considerations. Disabil Rehabil. 1999;21(5/6):284-94. Includes data on increasing longevity.
Janicki MP, Heller T, Seltzer GB, Hogg J. Practice guidelines for the clinical assessment and care management of Alzheimer’s disease and other dementias among adults with intellectual disability. AAMR-IASSID Workgroup on Practice Guidelines for Care Management of Alzheimer’s Disease among Adults with Intellectual Disability. J Intllect Disabil Res. 1996;40(Pt 4):374-832.
Johnson CP, Kastner TA, Committee/Section on Children with Disabilities. Helping families raise children with special health care needs at home. Pediatrics. 2005;115(2):507-11.
Johnson CP, Myers SM, Council on Children with Disabilities. Identification and evaluation of children with autism spectrum disorders. Pediatrics. 2007;120(5):1183-1215. Excellent review.
Jurkowski JM. Photovoice as participatory action research tool for engaging people with intellectual disabilities in research and program development. Intellect Dev Disabil. 2008;46(1):1-11.
Kerker BD, Owens PL, Sigler E, Horwitz SM. Mental health disorders among individuals with mental retardation: challenges to accurate prevalence estimates. Public Health Rep. 2004;119:409-17.
Kerr M. on behalf of the guidelines working group. Consensus guidelines into the management of epilepsy. J Intllect Disabil Res. 2009; 53(8):687-94.
King TE, Wheeler MB, BindmanAB, Fernandez A, Grumbach K et. al. Medical Management of Vulnerable and Underserved Patients: Principles, Practice and Populations. New York:McGraw-Hill;2007. Large medical textbook with chapters written by many faculty from the Department of Family and Community Medicine at UCSF. Very practical.
Kozma C. Down syndrome and dementia. Top Geriatri Rehabil. 2008:24(1):41-53. Excellent overview.
Krigger K. Cerebral palsy: an overview. Am Fam Physician. 2006;73(1) 91-100.
Lang R, White PJ, Machalicek W, Rispoli M, Kang S, et. al. Treatment of bruxism in individuals with developmental disabilities: a systematic review. Res Dev Disabil. 2009;30:809-18.
Leeder, SR, Dominello A. Health, equity and intellectual disability. J Appl Research Intellect Disabil. 2005;18(2):97-100.
Lennox N, et. al. Health Guidelines for Adults with an Intellectual Disability. Available at: Accessed 08/20/09.
Lennox N, Beange H, Davis R et al. Management Guidelines –Developmental Disability 2005. Therapeutic Guidelines Limited,Melbourne, Australia.
Lennox N, Chaplin R. The psychiatric care of people with intellectual disabilities: the perceptions of trainee psychiatrists and psychiatric medical officers. Aust N Z J Psychiatry. 1995;29(4):632-7.
Lennox NG, Diggens JN, Ugoni AM. The general practice care of people with intellectual disability: barriers and solutions. J Intllect Disabil Res. 1997;41:380-90.
Lennox NG, Kerr MP. Primary health care and people with an intellectual disability: the evidence base. J Intllect Disabil Res. 1997;41:365-72.
Levy JM, Botuck S, Damiani MR, Levy PH, Dern T, Freeman SE. Medical conditions and healthcare utilization among adults with intellectual disabilities living in group homes in New York City. Journal of Policy and Practice in Intellectual Disabilities. 2006;3(3):195-202.
Lewis, MA, Lewis CE, Leake B, King BH, Linemann R. The quality of health care for adults with developmental disabilities. Public Health Rep. 2002;117:174-184.
Long T, Kavarian S. Aging with developmental disabilities: an overview. Top Geriatri Rehabil.2008;24(1):2-11. Good overview.
Lunsky Y, Emery CF, Benson BA. Staff and self-reports of health behaviors, somatic complaints, and medications among adults with mild intellectual disability. J Intellect Dev Disabil. 2002;27(2):125-35.
Marco M, Iacono T. Mental health assessment and intervention for people with complex communication needs associated with developmental disabilities. Journal of Policy and Practice in Intellectual Disabilities. 2007;4(1):40-59.
Marks B, Sisirak J, Hsieh K. Health Services, health promotion and health literacy: Report from the state of the science in aging with developmental disabilities conference. Disabil Health J.
2008;1(3):136-42.
Massachusetts Department of Mental Retardation, University of Massachusetts Medical School’s Center for Developmental Disabilities Evaluation and Research. Preventive health recommendations for adults with mental retardation. Boston, MA: Massachusetts Department of Mental Retardation and University of Massachusetts Medical School’s Center for Developmental Disabilities Evaluation and Research; 2003 Sept 10. Summary of health maintenance guidelines. Not evidence based.
Matson JL, Wilkins J. A review and analysis of three measures for diagnosis of mental illness in individuals with intellectual disabilities. J Ment Health Res Intellect Disabil. 2008;1:2-18.
Matson JL, Wilkins J. Antipsychotic drugs for aggression in intellectual disability. Comment. Lancet. 2008;371:9-10.
May ME, Becker A, Zukotynski G, Kennedy CH. The community inclusion project: comprehensive assessment and treatment for individuals with dual diagnosis. VanderbiltUniversity. Available at: Accessed 2/20/08. Important demonstration project description of how patients with ID and challenging behaviors can be managed in the community.
McCarthy M, Thompson D. Sex and the 3 Rs. Ringbound resource. 2007. Pavillion. Available at: Accessed 8/20/09. A frank training resource, with clear line drawings to inform adults with learning disabilities about their rights and responsibilities and possible risks of their sexual lives.
McGaw S, Shaw T, Beckley K. Prevalence of psychopathology across a service population of parents with intellectual disabilities and their children. Journal of Policy and Practice in Intellectual Disabilities. 2007;4(1):11-22.
McManus M, Fox H, O’Connor K, Chapman T, MacKinnon J. Pediatric perspectives and practices on transitioning adolescents with special needs to adult health care. (October 2006). Fact Sheet 6. The National Alliance to Advance Adolescent Health.
Medical Home Project of Santa ClaraCounty. Medical Home Notebook for Children with Special Health Care Needs. Parents Helping Parents, Inc. Santa Clara, CA95054-3222. Excellent example of a medical notebook for children.
Merrick J, Merrick E. Equal treatment: closing the gap. A formal investigation into physical health inequalities experienced by people with learning disabilities and/or mental health problems. Journal of Policy and Practice in Intellectual Disabilities. 2007;4(1):73.
Mesibov GB, Shea V, Schopler E. The TEACCH Approach to Autism Spectrum Disorders. New York, NY:Springer; 2004. Classic text on one of the most studied and used techniques for organizing behavior in autism. Techniques appropriate for all ages. Many helpful strategies that can be used to gain cooperation in the exam room or to teach self-care skills.