Skip to main content

Advertisement

Log in

Patient and Family Advocacy: Working with Individuals with Comorbid Mental Illness and Developmental Disabilities and their Families

  • Original Paper
  • Published:
Psychiatric Quarterly Aims and scope Submit manuscript

Abstract

There are many factors to consider when working with individuals with mental illness and developmental disabilities and their families. Working in collaboration with individuals and their families using a patient- and family-centered care approach is vital. This approach informs the professional’s values and practice patterns thereby allowing them to help the individual and family deal with common challenges and stresses such as establishing relationships with care providers, ensuring coordination of care, family concerns, knowledge of important systems of care, and the need for advocacy.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Similar content being viewed by others

References

  1. Johnson B: Family-centered care: Four decades of progress. Families, Systems & Health: Special issues on consumers and collaborative care 18(2):137–156, 2000

    Google Scholar 

  2. Kubler-Ross E: On Death and Dying. New York, MacMillan American, 1969

    Google Scholar 

  3. Worthington RC: Models of linear and cyclical grief. Clinical Pediatrics 33(5):297–300, 1994

    Google Scholar 

  4. Miceli PJ, Clark PA: Your patient—my child: Seven priorities for improving pediatric care from the parent’s perspective. Journal of Nursing Care Quality 20(1):43–53, 2005

    PubMed  Google Scholar 

  5. Cavet J, Sloper P: Disabled children’s participation in decision-making. Children and Society 18:278–290, 2004

    Article  Google Scholar 

  6. Fletcher R, Loschen E, Stavrakaki C, et al.: Diagnostic Manual-Intellectual Disability (DM-ID): A Textbook of Diagnosis of Mental Disorders with Intellectual Disability. New York, American Psychiatric Publishing, 2007

    Google Scholar 

  7. Association of University Centers on Disabilities: University Centers for Excellence in Developmental Disabilities, Education, Research & Service: Available at http://www.aucd.org/directory/directory.cfm?program=UCEDD [accessed: March 6, 2008]

  8. American Academy of Pediatrics: American Academy of Pediatrics Ad Hoc Task Force on definition of the medical home: The medical home. Pediatrics 90:774, 1992

    Google Scholar 

  9. American Academy of Pediatrics: Care coordination: Integrating health and related systems of care for children with special health care needs. Pediatrics 104:978–981, 1999

    Article  Google Scholar 

  10. Palfry JS, Sofis LA, Davidson EJ, et al.: The pediatric alliance for coordinated care: Evaluation of a medical home model. Pediatrics 113(5):1507–1516, 2004

    Google Scholar 

  11. American Academy of Child and Adolescent Psychiatry: Systems-based practice: Developmental disabilities module. Washington, DC, American Academy of Child and Adolescent Psychiatry, 2007

    Google Scholar 

  12. Dosa NP, White PH, Schuyler V: Future Expectations: Transition from Adolescence to Adulthood. In: Batshaw ML, Pellegrino L, Roizen NJ (Eds) Children with Disabilities, 6th edn., Baltimore, MD, Paul H. Brookes Publishing, pp. 613–622, 2007

    Google Scholar 

  13. Reiss J, Gibson R: Health care transition: Destinations unknown. Pediatrics 110(6, Pt. 2):1307–1314, 2002

    PubMed  Google Scholar 

  14. American Academy of Pediatrics, American Academy of Family Physicians, & American College of Physicians—American Society of Internal Medicine: A consensus statement of health care transitions for young adults with special care needs. Pediatrics 110(6, Pt.2):1304–1306, 2002

    Google Scholar 

  15. Green S, Davis C, Karshmer E, et al.: Living stigma: The impact of labeling, stereotyping, separation, status-loss and discrimination in the lives of individuals with disabilities and their families. Sociological Inquiry 75(2):197–215, 2005

    Article  Google Scholar 

  16. Baxter C, Cummins RA, Yiolitis L: Parental stress attributed to family members with and without disability: A longitudinal study. Journal of Intellectual and Developmental Disability 25(2):105–118, 2000

    Article  Google Scholar 

  17. Andersson A: Depression and anxiety in families with a mentally handicapped child. International Journal of Rehabilitation Research 16(3):165–169, 1993

    Article  PubMed  CAS  Google Scholar 

  18. Blacher J, Mink IT: Interviewing Family Members and Care Providers: Concepts, Methodologies and Cultures. In: Emerson E, Hatton C, Thompson, T, Parmenter T (Eds) The International Handbook of Applied Research in Intellectual Disabilities, Hoboken, NJ, John Wiley & Sons, pp. 133–160, 2004

    Chapter  Google Scholar 

  19. American Academy of Family Physicians: Caregiver stress: (2006) Available at http://familydoctor.org/online/famdocen/home/common/mentalhealth/stress/645.html

  20. Coleby M: The school-aged siblings of children with disabilities. Developmental Medicine and Child Neurology 37:415–426, 1995

    PubMed  CAS  Google Scholar 

  21. Brody D: The Elephant in the Playroom. New York, Penguin Group, 2007

    Google Scholar 

  22. Trachtenberg SW, Batshaw K, Batshaw M: Caring and Coping: Helping the Family of a Child with a Disability. In: Batshaw ML, Pellegrino L, Roizen NJ (Eds) Children with Disabilities, 6th edn., Baltimore, MD, Paul H. Brookes Publishing, pp. 601–612, 2007

    Google Scholar 

  23. Harris JC: Intellectual Disability: Understanding Its Development, Causes, Classification, Evaluation, and Treatment. New York, Oxford University Press, p. 143, 2005

    Google Scholar 

  24. National Association of State Directors of Developmental Disabilities Services: Member state agencies: Available at http://www.nasddds.org/MemberAgencies/index.shtml [accessed: March 6, 2008]

  25. Meisels SJ, Wasik BA: Who Should be Served? Identifying Children in Need of Early Intervention. In: Meisels SJ, Shonkoff JP (Eds) Handbook of Early Childhood Intervention, New York, Cambridge University Press, pp. 605–632, 1990

    Google Scholar 

  26. Clair EB, Church RP, Batshaw ML: Special Education Services. In: Batshaw ML, Pellegrino L, Roizen NJ (Eds) Children with Disabilities, 6th edn., Baltimore, MD, Paul H. Brookes Publishing, pp. 523–538, 2007

    Google Scholar 

  27. National Dissemination Center for Children with Disabilities: State resources: February 19, 2008. Available at http://www.nichcy.org/states.htm

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Kaye McGinty.

Rights and permissions

Reprints and permissions

About this article

Cite this article

McGinty, K., Worthington, R. & Dennison, W. Patient and Family Advocacy: Working with Individuals with Comorbid Mental Illness and Developmental Disabilities and their Families. Psychiatr Q 79, 193–203 (2008). https://doi.org/10.1007/s11126-008-9075-1

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11126-008-9075-1

Keywords

Navigation