Gap analysis of service needs for adults with neurodevelopmental disorders

Abstract

In Florida, the Agency for Persons with Disabilities provides waivers for adults with the following types of disabilities: intellectual disability, autism spectrum disorder, cerebral palsy, spina bifida, Down syndrome, and Prader–Willi syndrome. This review examined the peer-reviewed literature to indicate and assess the common needs for individuals with intellectual and developmental disabilities. Current models of service delivery, the efficacy of these services, and remaining gaps in the need fulfillment of individuals within the six diagnostic categorizations of interest were examined. Severity level within each diagnostic category was plotted on a matrix according to whether the needs of individuals were minimal, moderate, severe, or universal. The study found that sexual health education, socialization, and adult-focused medical care are universal needs among the six conditions. The study indicates that health-care professionals must work toward addressing the many unmet needs in comprehensive life span care services for adult individuals with neurodevelopmental disorders.

Keywords

autism spectrum disorders cerebral palsy developmental disability down syndrome intellectual disability Prader–Willi syndrome spina bifida

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References

103rd Congress (2008) Window of opportunity act. Available at: http://www.fddc.org/news/Window-of-Opportunity-Act-Autism-Compact (accessed 17 March 2017).

106th Congress (2000) The developmental disabilities assistance and bill of rights act of 2000 (DD Act). Available at: https://acl.gov/programs/AIDD/DDA_BOR_ACT_2000/p2_tI_subtitleA.aspx (accessed 17 March 2017).

110th Congress (2008) Public Law 110–325—ADA amendments act of 2008. US Government Publishing Office. Available at: https://www.gpo.gov/fdsys/pkg/PLAW-110publ32 5 (accessed 17 March 2017).

Agency for Persons with Disabilities (2016) About Us—State of Florida. Available at: http://apd.myflorida.com/about/ (accessed 12 March 2017).

American Psychiatric Association (APA) (2013) Diagnostic and Statistical Manual of Mental Disorders (DSM-5®). Washington, D.C.: American Psychiatric Publishing.

American Psychological Association (2000) Diagnostic and Statistical Manual of Mental Disorders, 4th ed, text revision. Arlington, VA: American Psychiatric Association.

Barf

Verhoef

Jennekens-Schinkel

. (2003) Cognitive status of young adults with spina bifida. Developmental Medicine and Child Neurology 45(12): 813–820. DOI: 10.1111/j.1469-8749.2003.tb00896.x

Barnes

Dennis

Hetherington

(2004) Reading and writing skills in young adults with spina bifida and hydrocephalus. Journal of the International Neuropsychological Society 10(5): 655–663.

Barnett

Maticka-Tyndale

(2015) Qualitative exploration of sexual experiences among adults on the autism spectrum: implications for sex education. Perspectives on Sexual and Reproductive Health 47(4): 171–179. DOI: 10.1363/47e5715

10.

Binks

Barden

Burke

. (2007) What do we really know about the transition to adult-centered health care? A focus on cerebral palsy and spina bifida. Archives of Physical Medicine and Rehabilitation 88(8) 1064–1073. DOI: 10.1016/j.apmr.2007.04.018

11.

Blackman

(2013) Mental health and cerebral palsy. Available at: http://ucp.org/resources/from-the-medical-director-s-desk/mental-health-and-cerebral-palsy/ (accessed 16 March 2017).

12.

Bogenschutz

Nord

Hewitt

(2015) Competency-based training and worker turnover in community supports for people with IDD: results from a group randomized controlled study. Intellectual and Developmental Disabilities 53(3): 182–195. DOI: 10.1352/1934-9556-53.3.182

13.

Bruder

Kerins

Mazzarella

. (2012) Brief report: the medical care of adults with autism spectrum disorders: identifying the needs. Journal of Autism and Developmental Disorders 42(11) 2498–2504. DOI: 10.1007/s10803-012-1496-x

14.

Carfì

Brandi

Zampino

. (2015) Editorial: care of adults with Down syndrome: gaps and needs. European Journal of Internal Medicine 26(6): 375–376. DOI: 10.1016/j.ejim.2015.04.018

15.

Carvill

(2001) Sensory impairments, intellectual disability and psychiatry. Journal of Intellectual Disability Research 45(P16): 467–483. DOI: 10.1046/j.1365-2788.2001.00366.x

16.

Centers for Disease Control and Prevention (CDC) (2014) Data and statistics/Down syndrome/birth defects/NCBDDD/CDC. Available at: https://www.cdc.gov/ncbddd/birthdefects/downsyndrome/data.html (accessed 12 March 2017).

17.

Centers for Disease Control and Prevention (CDC) (2016) Facts about ASD. CDC—facts autism spectrum disorders—NCBDDD. Available at: http://www.cdc.gov/ncbddd/autism/facts.html (accessed 12 March 2017).

18.

Cerebral Palsy Foundation (CPF) (2015) Types of cerebral palsy. Cerebral Palsy Foundation. Available at: http://yourcpf.org/types-of-cp/ (accessed 12 March 2017).

19.

Copet

Jauregi

Laurier

. (2010) Cognitive profile in a large French cohort of adults with Prader–Willi syndrome: differences between genotypes. Journal of Intellectual Disability Research 54(3): 204–215. DOI: 10.1111/j.1365-2788.2010.01251.x

20.

Dennis

Nelson

Jewell

. (2010) Prospective memory in adults with spina bifida. Child’s Nervous System 26(12): 1749–1755. DOI: 10.1007/s00381-010-1140-z

21.

English

Barnes

Taylor

. (2009) Mathematical development in spina bifida. Developmental Disabilities Research Reviews 15(1): 28–34. DOI: 10.1002/ddrr.48

22.

Erickson

Lee

Von Schrader

(2014) 2013 disability status report Florida. Disability Statistics. Available at: https://www.disabilitystatistics.org/ (accessed 17 March 2017).

23.

Gerhardt

Lainer

(2011) Addressing the needs of adolescents and adults with autism: a crisis on the horizon. Journal of Contemporary Psychotherapy 41(1): 37–45. DOI: 10.1007/s10879-010-9160-2

24.

Geuze

Jongmans

Schoemaker

. (2001) Clinical and research diagnostic criteria for developmental coordination disorder: a review and discussion. Human Movement Science 20(1–2): 7–47. DOI: 10.1016/S0167-9457(01)00027-6

25.

Gotham

Marvin

Taylor

. (2015) Characterizing the daily life, needs, and priorities of adults with autism spectrum disorder from interactive autism network data. Autism 19(7): 794–804. DOI: 10.1177/1362361315583818

26.

Graetz

(2010) Autism grows up: opportunities for adults with autism. Disability and Society 25(1): 33–47. DOI: 10.1080/09687590903363324

27.

Haak

Lenski

Hidecker

MJC

. (2009) Cerebral palsy and aging. Developmental Medicine and Child Neurology 51: 16–23. DOI: 10.1111/j.1469-8749.2009.03428.x

28.

Henderson

Lynch

Wilkinson

. (2007) Adults with Down’s syndrome: the prevalence of complications and health care in the community. British Journal of General Practice 57(534): 50–55.

29.

Jensen

Davis

(2013) Health care in adults with Down syndrome: a longitudinal cohort study. Journal of Intellectual Disability Research 57(10): 947–958. DOI: 10.1111/j.1365-2788.2012.01589.x

30.

Jongmans

Smits-Engelsman

BCM

Schoemaker

(2003) Consequences of comorbidity of developmental coordination disorders and learning disabilities for severity and pattern of perceptual—motor dysfunction. Journal of Learning Disabilities 36(6): 528–537. DOI: 10.1177/00222194030360060401

31.

Kazemi

Shapiro

Kavner

(2015) Predictors of intention to turnover in behavior technicians working with individuals with autism spectrum disorder. Research in Autism Spectrum Disorders 17: 106–115. DOI: 10.1016/j.rasd.2015.06.012

32.

Kirby

Sugden

(2007) Children with developmental coordination disorders. Journal of the Royal Society of Medicine 100(4): 182–186.

33.

Kooij

Bejerot

Blackwell

. (2010) European consensus statement on diagnosis and treatment of adult ADHD: the European network adult ADHD. BMC Psychiatry 10: 67. DOI: 10.1186/1471-244X-10-67

34.

Kumin

Schoenbrodt

(2016) Employment in adults with Down syndrome in the United States: results from a national survey. Journal of Applied Research in Intellectual Disabilities 29(4): 330–345. DOI: 10.1111/jar.12182

35.

Lee

Andrews

Rosoklija

. (2015) The effect of spinal cord level on sexual function in the spina bifida population. Journal of Pediatric Urology 11(3): 142 e1–6. DOI: 10.1016/j.jpurol.2015.02.010

36.

Mansell

Ashman

Macdonald

. (2002) Residential care in the community for adults with intellectual disability: needs, characteristics and services. Journal of Intellectual Disability Research 46(8): 625–633.

37.

Mcclure

Halpern

Wolper

. (2009) Emotion regulation and intellectual disability. Journal on Developmental Disabilities 15(2): 38–44. DOI: 10.13016/M28P01

38.

McGonnell

(2009) Changing needs for children and adults with spina bifida and hydrocephalus in Northern Ireland. Cerebrospinal Fluid Research 6: S45. DOI: 10.1186/1743-8454-6-S2-S45

39.

National Association for Down Syndrome (2016) Facts about down syndrome. Available at: http://www.nads.org/resources/facts-about-down-syndrome/ (accessed 12 March 2017).

40.

National Children’s Bureau (NCB) (2012) Information about neurological disorders Part 1. Available at: http://spotidoc.com/doc/60610/information-about-neurological-disorders-part-1 (accessed 16 March 2017).

41.

National Down Syndrome Society (2012) Down syndrome facts. Available at: http://www.ndss.org/Down-Syndrome/Down-Syndrome-Facts/ (accessed 12 March 2017).

42.

Nieuwenhuijsen

Van Der Laar

Donkervoort

. (2008) Unmet needs and health care utilization in young adults with cerebral palsy. Disability and Rehabilitation 30(17): 1254–1262. DOI: 10.1080/09638280701622929

43.

Nydén

Niklasson

Stahlberg

. (2010) Adults with autism spectrum disorders and ADHD neuropsychological aspects. Research in Developmental Disabilities 31(6): 1659–1668. DOI: 10.1016/j.ridd.2010.04.010

44.

Peine

Darvish

Adams

. (1995) Medical problems, maladaptive behaviors, and the developmentally disabled. Behavioral Interventions 10: 149–159. DOI: 10.1002/bin.2360100304

45.

Pitzianti

D’Agati

Pontis

. (2016) Comorbidity of ADHD and high-functioning autism: a pilot study on the utility of the overflow movements measure. Journal of Psychiatric Practice 22(1): 22–30. DOI: 10.1097/PRA.0000000000000120

46.

Prader-Willi Syndrome Association (2016) PWS Basic Facts. Florida, USA: Prader-Willi Syndrome Association.

47.

Pueyo

Junqué

Vendrell

(2003) Neuropsychologic differences between bilateral dyskinetic and spastic cerebral palsy. Journal of Child Neurology 18(12): 845–850. DOI: 10.1177/088307380301801204

48.

Reddy

(2013) Cognitive function deficits in cerebral palsy: a comprehensive review and updates. International Journal of Current Research 5: 2931–2933.

49.

Servais

(2006) Sexual health care in persons with intellectual disabilities. Developmental Disabilities Research Reviews 12(1): 48–56. DOI: 10.1002/mrdd.20093

50.

Shaw

Cartwright

Craig

(2011) The housing and support needs of people with an intellectual disability into older age. Journal of Intellectual Disability Research 55(9): 895–903. DOI: 10.1111/j.1365-2788.2011.01449.x

51.

Sinnema

Boer

Collin

. (2011) Psychiatric illness in a cohort of adults with Prader-Willi syndrome. Research in Developmental Disabilities 32(5): 1729–1735. DOI: 10.1016/j.ridd.2011.02.027

52.

Smits-Engelsman

BCM

Jover

Green

. (2017) DCD and comorbidity in neurodevelopmental disorder: how to deal with complexity? Human Movement Science 53: 1–4. DOI: 10.1016/j.humov.2017.02.009

53.

Smyth

Healy

Lydon

(2015) An analysis of stress, burnout, and work commitment among disability support staff in the UK. Research in Developmental Disabilities 47: 297–305. DOI:10.1016/j.ridd.2015.09.023

54.

Spina Bifida Association (2015). What is SB? Available at: http://spinabifidaassociation.org/what-is-sb/ (accessed 12 March 2017).

55.

Stern

(2016) Definition of cerebral palsy. cerebralpalsy.org. Available at: http://www.cerebralpalsy.org/about-cerebral-palsy/definition (accessed 16 March 2017).

56.

Stevenson

Pharoah

POD

Stevenson

(1997) Cerebral palsy—the transition from youth to adulthood. Developmental Medicine and Child Neurology 39: 336–342. DOI: 10.1111/j.1469-8749.1997.tb07441.x

57.

Stubberud

Riemer

Grimsrud

. (2009) Living with spina bifida: neurological and neuropsychological functioning in adults with severely impaired psychosocial adaptation. Cerebrospinal Fluid Research 6: S6. DOI: 10.1186/1743-8454-6-S2-S6

58.

Sugarman

Jacobs

Paulson

. (2014) Examination of the cognitive profile of adults with Prader–Willi syndrome using the dementia rating scale-2: a pilot study. Journal of Intellectual and Developmental Disability 39(1): 102–107. DOI: 10.3109/13668250.2013.870330

59.

Taggart

Truesdale-Kennedy

Ryan

. (2012) Examining the support needs of ageing family carers in developing future plans for a relative with an intellectual disability. Journal of Intellectual Disabilities 16(3): 217–234. DOI: 10.1177/1744629512456465

60.

Thorpe

Davidson

Janicki

(2001) Healthy ageing—adults with intellectual disabilities: biobehavioural issues. Journal of Applied Research in Intellectual Disabilities 14(3): 218–228. DOI: 10.1046/j.1468-3148.2001.00069.x

61.

Toomela

(2012) Short-term memory in young adults with spastic diplegic cerebral palsy. Developmental Neuropsychology 37(4): 317–332. DOI: 10.1080/87565641.2011.632461

62.

Tremblay

C III

Victor

Joly

(2016) Staff turnover and service quality within residential settings. Human Service Organizations: Management, Leadership and Governance 40: 22–36. DOI: 10.1080/23303131.2015.1085479

63.

van Nieuwpoort

Deijen

Curfs

. (2011) The relationship between IGF-I concentration, cognitive function and quality of life in adults with Prader-Willi syndrome. Hormones and Behavior. 59(4): 444–450. DOI: 10.1016/j.yhbeh.2011.01.001

64.

US National Library of Medicine (2017a) Spina Bifida. Available at: https://medlineplus.gov/spinabifida.html.

65.

US National Library of Medicine (2017b) What are genomic imprinting and uniparental disomy? Available at: https://ghr.nlm.nih.gov/primer/inheritance/updimprinting (accessed 15 June 2017).

66.

Wark

Hussain

Edwards

(2014) The training needs of staff supporting individuals ageing with intellectual disability. Journal of Applied Research in Intellectual Disabilities 27(3): 273–288. DOI: 10.1111/jar.12087

67.

Watson

Richards

Miodrag

. (2012) Sex and genes, part 1: Sexuality and Down, Prader–Willi, and Williams syndromes. Intellectual and Developmental Disabilities 50: 155–168. DOI: 10.1352/1934-9556-50.2.155

68.

West

Brodie

Dicker

. (2011) Development of health support services for adults with spina bifida. Disability and Rehabilitation 33(23–24): 2381–2388. DOI: 10.3109/09638288.2011.568664

69.

Wiegerink

Roebroeck

Bender

. (2011) Sexuality of young adults with cerebral palsy: experienced limitations and needs. Sexuality and Disability 29(2): 119–128. DOI: 10.1007/s11195-010-9180-6

70.

World Health Organization (2017) International classification of functioning, disability and health (ICF). WHO. Available at: http://www.who.int/classifications/icf/en/ (accessed 15 June 2017).