1. For the purpose of brevity, we refer to adult offspring as “children,” in the relational sense, not as a reflection of age.

2. There is an extensive literature on the nature of disability, featuring a competition among various models. For an excellent introduction to the issue, see Wasserman, D. Philosophical issues in the definition and social response to disability. In: Albrecht, G, Seelman, K, Bury, M, eds. Handbook of Disability Studies. London: Sage; 2001.Google Scholar Because our argument does not assume a particular model, we do not need to adjudicate the debate over the nature of disability.

3. Caring for a child with special healthcare needs can be an overwhelming task, and we do not mean to burden already overwhelmed parents with what might seem to be yet an additional burden. Although our recommendations are framed as parental obligations, they can potentially help to alleviate the caregiving responsibilities that parents face: to the extent that children develop autonomy and independence, this growth will benefit not only them but also their parents. We acknowledge that this potential is not present for all the adult offspring we are discussing.

4. Anita Silvers and Leslie Francis Pickering argue for including adults with cognitive disability in theories of justice, providing foundations for a societal obligation to provide for them (Silvers, A, Francis, LP. Thinking about the good: Refiguring liberal metaphysics (or not) for people with cognitive disabilities. Metaphilosophy 2009;40:475–98CrossRefGoogle Scholar).

5. In a similar vein, Grant Gillett discusses “the ability to act or enact one’s own story” (Gillett, G. How do I learn to be me again? Autonomy, life skills, and identity. In: Radoilska, L. Autonomy and Mental Disorder. New York: Oxford; 2012: 233–51.CrossRefGoogle Scholar)

6. There are various definitions of “autonomy,” for both medical and social contexts, as well as various critiques of mainstream thinking about autonomy. With no pretense of adequately defending of our definition, we submit that it is largely compatible with leading conceptions. See also notes 7–11.

7. This analysis shares with that of Beauchamp and Childress (Beauchamp, TL, Childress, JF. Principles of Biomedical Ethics. 7th ed. New York: Oxford University Press; 2013, at 104–5Google Scholar) the conditions of intentionality, understanding, and freedom from controlling influences.

8. This analysis shares with the partial analysis presented by DeGrazia, Mappes, and Brand-Ballard (DeGrazia, D, Mappes, TA, Brand-Ballard, J. Introduction. In: DeGrazia, D, Mappes, TA, Brand-Ballard, J. Biomedical Ethics. 7th ed. New York: McGraw-Hill; 2011:41–44Google Scholar) the distinction between external and internal controlling influences or constraints, while adding the fourth condition mentioning the subject’s priorities and values.

9. Cf, DeGrazia D. Human Identity and Bioethics. Cambridge: Cambridge University Press; 2005, at 95–106.Google Scholar

10. Cf, Dworkin G.Acting freely. Nous 1970;4:367–83.Google Scholar

11. Cf, Frankfurt H.Freedom of the will and the concept of a person. Journal of Philosophy 1971;68:5–20.Google Scholar

12. See, e.g., note 7, Beauchamp, Childress 2013.

13. Perfect independence would be an individual’s ability to be entirely self-reliant and never require assistance from another individual. As every autonomous, independent adult requires some form of assistance at some point, whether from a mechanic when his car breaks down or from a babysitter when she has a work dinner, perfect independence is not the standard we use in defining independence.

14. We recognize that not every adult who carries one of these diagnoses will be an adult with diminished self-governance. These examples are meant to be neither comprehensive nor defining of our population. We aim merely to identify concrete examples of groups of individuals whose members are frequently adults with limited self-governance.

15. In this connection, Gillett explores the interactive process by which adults with mental illness develop their “discursive abilities” through learning interactions with close associates (see note 5, Gillett 2012).

16. We note that children with autism may or may not experience cognitive impairment. The Child Mind Institute provides helpful clarifications regarding these conditions: Child Mind Institute. FAQs about Autism; 2004; http://www.childmind.org/en/autism-faqs/.(last accessed 28 Sept 2015).

17. In contrast, adults with severe cognitive disabilities—such as individuals with hypoxic ischemic encephalopathy, an in utero neurologic insult, hydrocephalus, or a severe intraventricular hemorrhage—are substantially nonautonomous, lacking any significant decisionmaking capacity. Though it is important to recognize the dignity of these adults, such substantially cognitively disabled individuals are not the focus of our discussion on cultivating autonomy.

18. For a fuller description of this enmeshment when the child is young, see Bowyer, L. The ethical grounds for the best interest of the child. Cambridge Quarterly of Healthcare Ethics 2016;25(1):63–9.CrossRefGoogle ScholarPubMed

19. Some adults with diminished self-governance move into group homes or other housing arrangements where they are dependent not on their parents but on other caregivers. Though their relationship with their parents will be different under these circumstances, their reliance on others and their need for their parents to actively cultivate their self-governance are unlikely to change.

20. Nelson, HL, Nelson, JL. The Patient in the Family. New York: Routledge; 1995, at 74.Google Scholar

21. See note 5, Gillett 2012.

22. We have focused our discussion on theories of parenthood that describe the content of a parent’s obligations to his or her child, ignoring theories such as the causal theory and volunteerism, which aim to clarify who has parental obligations to a child and from what basis these obligations arise. This discussion is not intended to be either a complete survey of theories of parenthood or a thorough discussion of their supporting arguments and implications. It is intended, rather, to ground the discussion that follows.

23. Austin, MW. Conceptions of Parenthood. Farnham, England: Ashgate; 2007.Google Scholar

24. See note 23, Austin 2007, at 113.

25. See note 23, Austin 2007, at 111.

26. Vargas T. Woman with Down syndrome prevails over parents in guardianship case. Washington Post 2013 Aug 2; available at https://www.washingtonpost.com/local/woman-with-down-syndrome-prevails-over-parents-in-guardianship-case/2013/08/02/4aec4692-fae3-11e2-9bde-7ddaa186b751_story.html (last accessed 31 Aug 2015). A lengthy description of the Jenny Hatch case is not feasible here, but the case exemplifies the conflict that can arise between a parent’s obligation to protect his or her child and his or her duty to cultivate the child’s autonomy and independence. Jenny Hatch was a young woman with Down syndrome who successfully petitioned the court, with the help of her employers and friends, to overturn her parents’ legal guardianship. Her parents opposed the court ruling because they felt that guardianship and the structured environment of a group home were in Jenny’s best interest.

27. Although the Nelsons focus on family relationships in general, much of what they say is particularly applicable to the parent-child relationship with a semiautonomous adult child. The Nelsons focus on family relationships in which one member has a significant interaction with the healthcare system—and the impact this has on the rest of the family.

28. See note 20, Nelson, Nelson 1995, at 74. The next two quotations come from the same page.

29. Feinberg, J. The child’s right to an open future. In: Aiken, W, LaFollette, H, eds. Whose Child? Children’s Rights, Parental Authority, and State Power. Totowa, NJ: Littlefield Adams; 1980:124–53.Google Scholar

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34. See note 33, Bigelow et al., at 192.

35. To their credit, Bigelow et al. recognize that the process of developing autonomy sometimes fails and that, in these cases, parents continue to have responsibilities. However, they give no advice as to what parents can do to encourage autonomy in their children when it does not develop naturally.

36. Mullin, A. Children, paternalism and the development of autonomy. Ethical Theory and Moral Practice 2014;17:413–26, at 415.CrossRefGoogle Scholar

37. See also note 5, Gillett 2012.

38. See note 36, Mullin 2014, at 417.

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40. This topic also appears in healthcare ethics. Guy Widdershoven and Tineke Abma argue for an active role for healthcare providers in ensuring their patients’ autonomous decisions. They feel that autonomy requires “support from others who may help the person to find out what is right for him through dialogue and deliberation” (Widdershoven, G, Abma, TA. Autonomy, dialogue, and practical rationality. In Radiolska, L, ed. Autonomy and Mental Disorder. New York: Oxford University Press; 2012:217–32CrossRefGoogle Scholar).

41. Children with special healthcare needs often feel more limited in their future prospects than their medical condition entails. Such children are often treated as medically fragile—sometimes rightly and sometimes out of habit. Children may internalize this portrayal and view their future as more limited than it is.

42. Schapiro, T. What is a child? Ethics 1999;109;715–38, at 736.CrossRefGoogle Scholar

43. See note 5, Gillett 2012.

44. The partially paternalistic approach to decisionmaking is similar to a liberal political theory that appeals to “the shared construction of the good.” Representing this theoretical perspective, Silvers and Francis (see note 4, Silvers, Francis 2009) argue that a “trustee” can assist in developing a conception of the good for a severely cognitively disabled person. Insofar as developing one’s own values and priorities is part of developing autonomy, we find the authors’ thesis to be in line with our approach.

45. Supported decision-making: An agenda for action—February 2014 (document produced for Best Practices in Supported Decision-Making, a symposium organized by Quality Trust for Individuals with Disabilities, the Council on Quality and Leadership, and the Burton Blatt Institute); 2014 Feb; available at http://bbi.syr.edu/news_events/news/2014/02/Supported%20Decision%20Making-2014.pdf. (last accessed March 2015).

46. For an interesting discussion, see Radoilska, L. Autonomy and Ulysses arrangements. In: Radoilska, L, ed. Autonomy and Mental Disorder. New York: Oxford University Press; 2012:252–80.CrossRefGoogle Scholar