1 Recent legislative efforts to reform health care on the national level culminated in Congress's enactment of the Patient Protection and Affordable Care Act of 2010. Pub. L. No. 111-148, 124 Stat. 119 (signed Mar. 23, 2010), available at http://democrats.senate.gov/reform/patient-protection-affordable-care-act-as-passed.pdf (as amended by Health Care and Education Reconciliation Act, Pub. L. No. 111-152, 124 Stat. 1029 (2010), available at http://frwebgate.access.gpo.gov/cgibin/getdoc.cgi?dbname=111_cong_bills&docid=f:h4872enr.txt.pdf).

2 Harriette B. Fox, Margaret A. McManus & Mary B. Richmond, Maternal & Child Health Policy Research Ctr., The Strengths and Weaknesses of Private Health Insurance Coverage for Children with Special Health Care Needs 1 (2002).

3 See Benjamin Chan Lola et al., Minnesota Children with Special Health Needs, Caring for Our Children: A Study of TEFRA in Minnesota 6 (1998) (noting that “[p]rivate health plans have been developed with a generally healthy, adult population in mind … When applied to children with chronic health conditions and disabilities, these cost-sharing mechanisms have the potential to limit access to critically needed services.”).

4 Children with Disabilities: Medicaid Can Offer Important Benefits and Services: Hearing Before the S. Comm. on the Budget, 106th Cong. 1 (2000) (testimony of William J. Scanlon, Director, Health Financing and Public Health Issues, Health and Human Services Division).

5 Nat’l Digestive Diseases Info. Clearinghouse, Crohn's Disease, (2006), available at http://digestive.niddk.nih.gov/ddiseases/pubs/crohns/crohns.pdf.

6 See, e.g., Crohn's and Colitis Found. of America (CCFA), Intestinal Complications, http://www.ccfa.org/info/about/complications/intestinalcomplications. The CCFA is a non-profit foundation dedicated to finding a cure for Crohn's disease and ulcerative colitis. See CCFA, About the Crohn's and Colitis Foundation, http://www.ccfa.org/about/?LMI=0.

7 See, e.g., CCFA, Maintenance Therapy, http://www.ccfa.org/info/treatment/maintenance.

8 Alfred I. duPont Hospital for Children, Hospital billing statement 2 (Oct. 25, 2007) (on file with author). I represented this child, who received intravenous drug infusions every five to seven weeks, with his family's private health insurance covering only eighty percent of the cost. The child also takes daily medications and requires regular laboratory tests, colonoscopies, endoscopies, bone scans, and visits with a pediatric gastroenterologist. At trial, his treating physician testified that without the drug infusions, the child's “Crohn's Disease will surely flare.” The family travels four hours round trip to the children's hospital where the child receives treatment (administrative hearing record, on file with author). Identifying information is withheld to preserve client confidentiality. See Miller, Binny, Telling Stories About Cases and Clients: The Ethics of Narrative, 14 Geo. J. Legal Ethics 1, 7, 54 (2000)Google Scholar (“suggest[ing] that client consent should not always be a prerequisite to writing and publishing stories about cases” while recommending an “ethics of narrative that respects client stories beyond the confines of confidentiality.”).

9 42 U.S.C. § 1396a(e)(3) (2006); 42 C.F.R. § 435.225 (2010).

10 Bullock, Adria N., The Sacrifice Wrought By a Costly and Fragmented Mental Health System: Parents Forced To Relinquish Custody To Obtain Care For Their Children, 24 Dev. Mental Health L. 17, 34 (2005)Google Scholar (noting that half of these states fail to cover children with serious emotional or mental health disorders). A 2002 report issued by the Judge David L. Bazelon Center for Mental Health Law lists the following states as having elected this Medicaid option: Alaska, Arkansas, Connecticut, Delaware, Georgia, Idaho, Maine, Massachusetts, Michigan, Minnesota, Mississippi, Nebraska, Nevada, New Hampshire, Rhode Island, South Carolina, South Dakota, Vermont, West Virginia, and Wisconsin. Avoiding Cruel Choices: A guide for policymakers and family organizations on Medicaid's role in preventing custody relinquishment at 20 (November 2002).

11 See infra Appendix.

12 See, e.g., E.F.R. v. Meconi, C.A. No. 07A-12-004 RFS (Del. Super. 2004); In re E.F.R., DCIS No. 2003557226 (Del. Dep't of Health & Human Servs. Nov. 8, 2007); In re C.S., DCIS No. 0003573604 (Del. Dep't of Health & Human Servs. 2007); Kevin Landrigan, Bill Would Let Disabled Kids Keep Home Care, The Telegraph, Mar. 11, 2004 (recounting state's allegation that children no longer qualified for Medicaid coverage, and parents’ response only because of access to care through the Medicaid program).

13 Although this language is not required by federal law, South Dakota's regulations make the “catch-22” clear by providing that a “child who is medically stable, even though disabled, is not considered in need of a level of care.” S.D. Admin. R. § 67:46:09:06 (Aug. 23, 1992). Cf. 7 AK. Admin C. § 43.185 (b) (defining “intermediate nursing services” in part as “the observation, assessment, and treatment of a recipient with long-term illness or disability whose condition is relatively stable and where the emphasis is on maintenance rather than rehabilitation …”); R.I. Dep't of Human Servs. Level of Care Criteria, Medical Assistance Eligibility Under the Katie Beckett Option 8, 15 (Aug. 1, 2006) (listing factors to consider when making level of care determinations, including the “prevention of deceleration, regression, or loss of optimal functional status” and the need for “specialized professional training and monitoring beyond those ordinarily expected of parents.”).

14 42 U.S.C. § 1396a(e)(3)(B)(i) (2006); 42 C.F.R. §§ 435.225(a), (b)(1) (2010).

15 See Chan et al., Minn. Dep't of Health, supra note 3, at 76 (noting that “‘people with disabilities are a litmus test for managed care [because they] … [are] most aware of the limitations of the acute care bias in [the] health care system; [and] … [have] the greatest potential for generating savings through prevention of secondary conditions.’”) (internal citation omitted).

16 See supra Parts I, III.C.

17 Field, Marilyn J. & Jette, Alan M., eds. The Future of Disability in America at 98, National Academies Press (Washington, D.C. 2007).Google Scholar

18 Chan et al., Minn. Dep't of Health, supra note 3, at 10; see also Anne L. Alstott, No Exit: What Parents Owe Their Children and What Society Owes Parents 125-27 (2004) (recognizing a “role for social insurance” to support parents in providing continuity of care for children with disabilities with the resultant curtailment in their own “life options”).

19 Catalyst Center, State-at-a-Glance Chartbook on Coverage and Financing for Children and Youth with Special Healthcare Needs, http://www.hdwg.org/catalyst (Feb. 28, 2011) (reporting numbers from the National Survey of Children with Special Health Care Needs and using the Maternal & Child Health Bureau's definition of “children and youth with special health care needs” ).

20 Id.

21 U.S. Dep't of Health & Human Servs, Health Resources & Servs. Admin, The National Survey of Children with Special Health Care Needs Chartbook 2005-2006, http://mchb.hrsa.gov/cshcn05/NF/1prevalence/family.htm (Feb. 28, 2011).

22 Harriette B. Fox et al., Maternal & Child Health Policy Research Ctr., The Strengths and Weaknesses of Private Health Insurance Coverage for Children with Special Health Care Needs (2002).

23 Peele, Pamela B. et al., Exclusions and Limitations in Children's Behavioral Health Care Coverage, 53 Psychiatric Servs. 591, 593 (2002).CrossRefGoogle ScholarPubMed

24 Id.

25 Id. at 8.

26 Id. at 11.

27 Id. at 15.

28 See id. at 20-27.

29 Chan, Benjamin & Vanderburg, Nancy, Medicaid TEFRA Option in Minnesota: Implications for Patient Rights, 21 Health Care Fin. Rev. 65, 77 (1999).Google ScholarPubMed

30 Id. (noting that “[u]nder incentives to cut costs, managed care plans have strong disincentives to excel in serving the sickest and the most expensive users”).

31 Id. at 77.

32 Semansky, Rafael & Koyanagi, Chris, The TEFRA Medicaid Eligibility Option for Children with Severe Disabilities: A National Study, 31 J. Behav. Health Sci. & Res. 334, 337 (2004)Google ScholarPubMed. Sixty percent of North Dakota families of children who participate in North Dakota's Children's Special Health Services Program reported that “their source of health care coverage did not pay for all of the health care services needed by their child during the last year.” Children's Special Health Servs. Unit, Med. Servs. Div., N.D. Dep't of Human Servs, 2004 Family Survey Executive Summary 5 (2005).

33 Fox et al., supra note 22, at ii.

34 Id.

35 Warren, Elizabeth, Bankrupt Children, 86 Minn. L. Rev. 1003, 1021 (2002).Google Scholar

36 Semansky & Koyanagi, supra note 32, at 336; see also Scanlon Testimony, supra note 4, at 12.

37 Peele, Pamela B. et al., Exclusions and Limitations in Children's Behavioral Health Care Coverage, 53 Psychiatric Servs. 591, 593 (2002).CrossRefGoogle ScholarPubMed

38 Chan & Vanderburg, supra note 29, at 67.

39 Inclusion of children with significant health care needs in the Medicaid population is noteworthy because of the expansive benefits package afforded to Medicaid-eligible children. Medicaid's Early and Periodic Screening Diagnosis and Treatment (EPSDT) Program requires that any medical care “necessary … to correct or ameliorate defects and physical and mental illnesses and conditions” must be provided to children under age twenty-one. 42 U.S.C. § 1396d(r)(5) (2006); see also 42 U.S.C. § 1396a(a)(43) (2006); S.D. ex rel. Dickson v. Hood, 391 F.3d 581, 589-93 (5th Cir. 2004). By articulating a definition of medical necessity specifically for children who receive Medicaid, in addition to placing an emphasis on preventative health care, see, e.g., 42 U.S.C. § 1396d(r)(1) (mandating periodic screening services); H.R. Rep. No.101-247, 399 (1989), reprinted in 1989 U.S.C.C.A.N. 1906, 2125 (describing “preventative thrust of the EPSDT benefit”), and mandating that states cover children for all services that are considered optional under federal law for adults, see 42 U.S.C. § 1396d(r)(5), Congress demonstrated its intention to ensure that Medicaid coverage of children's benefits is expansive. See, e.g., Rosie D. v. Romney, 410 F. Supp. 2d 18, 26 (D. Mass. 2006) (“The breadth of EPSDT requirements is underscored by the statute's definition of ‘medical services.’ Section 1396d(a)(13) defines as covered medical services any “diagnostic, screening, preventative, and rehabilitative services, including any medical or remedial services … for the maximum reduction of physical or mental disability and restoration of an individual to the best possible functional level.”) (emphases in original).

40 Chan & Vanderburg, supra note 29, at 67.

41 Warren, supra note 35, at 1021.

42 Chan et al., Minn. Dep't of Health, supra note 3, at 48.

43 Semansky & Koyanagi, supra note 32, at 337 (citing Chan et al., Minn. Dep't of Health, supra note 3).

44 Chan et al., Minn. Dep't of Health, supra note 3, at 6.

45 Warren, supra note 35, at 1021; see also Miller-Wilson, Cathryn, Becoming Poor: Stories of the Real “Safety Net” and the Consequences for Middle America, 13 Quinnipiac Health L.J. 1, 18 (2009)Google Scholar (detailing “actual and hidden costs” of “medical bankruptcies” and asserting that “providing a health care safety net is much more cost effective than permitting the current system, with virtually no income and health insurance (or health care cost) support for the disabled, to continue.”).

46 Deborah Allen, The Catalyst Center, Improving Financing of Care for Children and Youth with Special Health Care Needs 9.

47 Warren, Elizabeth, The Growing Threat to Middle Class Families, 69 Brook. L. Rev. 401, 417 (2004) (emphasis in original).Google Scholar

48 Jim Dwyer, Without Health Care, One Burger From Ruin, N.Y. Times, Sept. 13, 2009, at MB1.

49 Statewide Parent Advocacy Network, Family Healthcare Story Book: Why Children with Special Healthcare Needs and Their Families Need Healthcare Reform Now! 2, http://www.spannj.org/Family2Family/NJ_Family_Healthcare_Stories_REVISED.pdf.

50 Sidell v. Maram, No. 05-cv-1001, 2007 WL 5396285, at *1 (C.D. Ill. May 14, 2007).

51 Complaint, Sidell v. Maram, 05-cv-1001 (C.D. Ill. filed Jan. 3, 2005) (No. 05-1001) 2005 WL 4114420, at *2.

52 Id., 2005 WL 4114420, at *3.

53 Sidell v. Maram, (No. 05-001, 2007 WL 5396285, at *1 (C.D. Ill. May 14, 2007). Although beyond the scope of this Article, the situation that led Gretchen's guardian to file suit, the curtailment of Medicaid services once children reach adulthood and become subject to state's often more restrictive benefits packages, is an area ripe for further inquiry. See also Grooms v. Maram, 563 F. Supp. 2d 840 (N.D. Ill. 2008); Radaszewki v. Maram, 383 F.3d 599 (7th Cir. 2004); but see Alabama Technology Assisted Waiver for Adults (“To provide services to individuals who received private duty nursing services through the EPSDT Program under the Medicaid State Plan who will no longer be eligible for the service upon turning age 21”), Ala. Admin Code r. 560-X-54-.02 (2010).

54 The National Survey of Children with Special Health Care Needs (2005-2006) reports that 59.1% of children and youth with special health care needs have private health insurance, 28.1% have public health insurance, and 7.4% have a combination of public & private insurance. Maternal and Child Health Bureau, U.S. Dept. of Health and Human Services, The National Survey of Children with Special Health Care Needs Chartbook 2005-2006, 19 (2007), http://mchb.hrsa.gov/cshcn05/MI/NSCSHCN.pdf. 23.8% of families with children with special health care needs report working reduced hours to care for their children. Id. at 43. But see Illinois All Kids program, which provides “comprehensive, affordable health insurance, regardless of family income, immigration status or health condition.” Dept. of Healthcare and Family Services, Answers to Your Questions About All Kids, available at http://www.allkids.com/assets/hfs8269.pdf.

55 William J. Scanlon Testimony, supra note 4, at 2.

56 SCHIP provides coverage to uninsured children in income-eligible families who earn too much to qualify for Medicaid. See Kaiser Commission on Medicaid and the Uninsured, Children's Health Insurance Program Reauthorization Act of 2009 (CHIPRA) 1 (2009), available at http://www.kff.org/medicaid/upload/7863.pdf.

57 McCormick, Marie C. et al., Annual Report on Access to and Utilization of Health Care for Children and Youth in the United States – 1999, 105 Pediatrics S219, S222 (2000)Google ScholarPubMed (reporting private insurance for 69.9% of children in excellent or good health and forty percent of children in fair or poor health).

58 Id. at 21.

59 Bazelon Ctr. for Mental Health Law, Avoiding Cruel Choices: A Guide for Policymakers and Family Organizations on Medicaid's Role in Preventing Custody Relinquishment 3 (2002), available at www.bazelon.org; see also William J. Scanlon Testimony, supra note 4, at 2 (“Limited mental health coverage in parents’ private insurance plans can create an incentive to use a foster care arrangements [sic] as a means of obtaining or maintaining access to Medicaid eligibility and services”).

60 Bazelon Ctr. for Mental Health Law, supra note 59, at 3 (citing National Alliance for the Mentally Ill, Families on the Brink 10 (1999).

61 See, e.g., Bullock, supra note 10, at 34; Semansky & Koyanagi, supra note 32, at 336; Boison, Elizabeth S., Mental Health Parity for Children and Adolescents: How Private Insurance Discrimination and ERISA Have Kept American Youth From Getting The Treatment They Need, 13 Amer. Univ. J. of Gender, Soc. Pol’y and L. 187, 188 (2005)Google Scholar; Random, Rebecca G. W., Custody Relinquishment to Obtain Mental Health Services, 7 J. L. & Fam. Studies 475 (2005)Google Scholar; Goodman, Gwen, Accessing Mental Health Care for Children: Relinquishing Custody to Save the Child, 67 Albany L. Rev. 301 (2003).Google ScholarPubMed

62 See Solomon Moore, Mentally Ill Offenders Strain Juvenile System, N.Y. Times, Aug. 9, 2009, at A1.

63 Id. (“By the 1980s, juvenile justice systems had become the primary providers of residential psychiatric care for mentally ill youths.”).

64 Bazelon Ctr. for Mental Health Law, supra note 59, at 3.

65 Patient Protection and Affordable Care (PPACA) Act, Pub. L. No. 111-48, § 1311, 124 Stat. 119-1025 (2010), as amended by the Health Care and Education Reconciliation Act, Pub. L. No. 111-52, §§ 10104, 10203, 124 Stat. 1029-84 (2010).

66 Id. §§ 1402(a), (b) (as amended by Recon. Act § 1001).

67 Id. § 1201 (as amended by § 2301 of Pub. L. No. 111-52).

68 Id. § 1001.

69 Id.

70 Id.

71 Id. § 1302.

72 See, e.g., Repealing the Job-Killing Health Care Law Act, H.R. 2, 112th Cong. (2011).

73 See, e.g., Florida v. Sebelius, No. 3:10-cv-00091 (N.D. Fl. filed Mar. 23, 2010); Virginia ex rel. Cuccinelli v. Sebelius, No. 3:10-cv-00188 (E.D. Va. filed Mar. 23, 2010); Commonwealth v. Sebelius, No. 11-1058 (4th Cir. filed Mar. 23, 2010); Liberty Univ. v. Geithner, No. 6:10-cv-00015 (W.D. Va. filed Mar. 23, 2010); Thomas More Law Center v. Obama, No. 2:10-cv-11156 (E.D. Mich. filed Mar. 23, 2010); Thomas More Law Center v. Obama, No. 10-2388 (6th Cir. Dec. 22, 2010); Calvey v. Obama, No. 5:10-cv-00353 (W.D. Okla. filed Apr. 8, 2010); Walters v. Holder, No. 2:10-cv-76 (S.D. Miss. filed Apr. 2, 2010); Ass’n of Am. Physicians & Surgeons v. Sebelius, No. 1:10-cv-499 (D.C. filed Mar. 26, 2010); Mead v. Holder, No. 1:10-cv-950 (D.C. filed June 9, 2010); Sissel v. U.S. Dep't of Health and Human Servs., No. 1:10-cv-01263 (D.C. filed July 26, 2010); U.S. Citizens Ass’n v. Obama, No. 5:10-cv-1065 (N.D. Ohio filed May 12, 2010); New Jersey Physicians, Inc. v. Obama, No. 2:10-cv-01489 (D. N.J. filed Mar. 24, 2010); Shreeve v. Obama, No. 1:10-cv-71 (E.D. Tenn. filed Apr. 8, 2010); Physician Hosps. of America v. Sebelius, No. 6:10-cv-00277 (E.D. Tex. filed Aug. 17, 2010); Bellow v. Sebelius, No. 1:10-cv-00165 (E.D. Tex. filed Mar. 24, 2010); Goudy-Bachman v. U.S. Dep't of Health and Human Servs., No. 1:10-cv-00763 (M.D. Pa. filed Apr. 9, 2010); Fountain Hills Tea Party Patriots v. Sebelius, No. 2:10-cv-00893 (D. Az. filed Apr. 22, 2010); Coons v. Geithner, No. 2:10-cv-01714 (D. Az. filed Aug. 12, 2010); Burlsworth v. Holder, No. 4:10-cv-00258 (E.D. Ark. filed Aug. 3, 2010); Baldwin v. Sebelius, No. 3:10-cv-01033 (S.D. Cal. filed Aug. 27, 2010); Baldwin v. Sebelius, No. 10-56374 (9th Cir. filed Sept. 1, 2010); Baldwin & Pacific Justice Inst. v. Sebelius, 131 S. Ct. 573 (2010), cert. denied, 79 U.S.L.W. 3149 (U.S. Nov. 8, 2010) (No. 10-369); Kinder v. Geithner, No. 1:10-cv-00101 (E.D. Mo. July 7, 2010); Indep. Am. Party of Nev. v. Obama, No. 2:10-cv-01477 (D. Nev. filed Aug. 31, 2010); Peterson v. Obama, No. 1:10-cv-00170 (D. N.H. filed May 4, 2010); Van Tassel v. United States, No. 1:10-cv-00310 (M.D. N.C filed Apr. 22, 2010); Pruitt v. Sebelius, No. 6:11- cv-00030 (E.D. Okla. Jan. 24, 2011).

74 Kaiser Family Foundation, Medicaid/SCHIP: People with Disabilities, http://www.kff.org/medicaid/disabilities.cfm (last visited Jan. 29, 2011). See also Andy Schneider et al., The Kaiser Commission on Medicaid and the Uninsured, Medicaid Eligibility, in The Medicaid Resource Book 5, 17 (2002) (noting that people with disabilities are both more likely to be enrolled in Medicaid and less likely to have private health insurance than members of the general population), available at http://www.kff.org/medicaid/2236-index.cfm.

75 Social Security Act of 1965, tit. XIX (codified at 42 U.S.C. §§ 1396-1396W-5).

76 42 U.S.C. §§ 1396a(a)(10)(A)(I), (IV), (VI), (VII), 1396a(a)(1)(A)-(D). In 2009, the federal poverty level was $22,050 for a family of four in the continental United States. Annual Update of the HHS Poverty Guidelines, 74 Fed. Reg. 4200 (Jan. 23, 2009).

77 See generally National Health Law Program, An Advocate's Guide to the Medicaid Program §§ 3.3, 3.9-3.16 (June 2001).

78 Patient Protection and Affordable Care Act, Pub. L. No. 111-148, § 2001(a)(1), 124 Stat. 272-75 (2010) (as amended by Recon. Act § 1201). The PPACA continues federal eligibility restrictions for legal immigrants, including the five-year waiting period for Medicaid. Undocumented immigrants remain ineligible for non-emergency Medicaid. States can opt to cover the expanded Medicaid population now and must do so by 2014, if they wish to continue to participate in the Medicaid program.

79 Id. §§ 2002(a)(14)(C), 2101(f) (as amended by Recon. Act § 1004).

80 See generally 42 U.S.C. § 1396n(c) (2006) (defining habilitation services, waiver of medical assistance requirement, and technical qualifications for habilitation services).

81 See supra Part III.D.

82 42 U.S.C. § 1396n(c); see also 42 C.F.R. § 441.301(b)(1)(iii) (2010).

83 Deficit Reduction Act of 2005, Pub. L. No. 109-71, § 6086 (2006).

84 Id.

85 Patient Protection and Affordable Care Act § 2402(b).

86 Patient Protection and Affordable Care Act § 2404(e), (f).

87 See generally Deficit Reduction Act of 2005, Pub. L. No. 109-171, §§ 6061-6062, 120 Stat. 96-99 (2006).

88 Deborah Allen, The Catalyst Center, The Family Opportunity Act Medicaid Buy-In Option: What We’ve Learned 12 (2008).

89 Semansky, & Koyanagi, , The TEFRA Medicaid Eligibility Option for Children with Severe Disabilities: A National Study, 31 J. Behav. Health Sci. & Res., 334, 336 (2004)Google ScholarPubMed (“In 1999, more than 120,000 children met SSI disability requirements, but were either denied eligibility or had their benefits suspended because of family income or resources”).

90 Katie Beckett is now an adult, living independently, and a college graduate. Her story, in her own words, is available online at Katie Beckett, Whatever Happened to Katie Beckett?, Section on Home Health Newsletter, Fall 2002, available at http://profiles.nlm.nih.gov/QQ/B/C/X/Y/_/qqbcxy.pdf (last visited Feb. 27, 2011). See also Cong. Research Serv., 100th Cong., Medicaid Source Book: Background Data and Analysis 69-70 (Comm. Print 1988). Chris Connell, HHS Waives Rules So Katie Can Have Medicaid at Home, Wash. Post, Nov. 13, 1981, at A20; Girl to be Treated at Home, N.Y. Times, Nov. 13, 1981, at A12, col. 5.

91 In Massachusetts, Kaileigh Mulligan's family's experience is similar. In 1987, by age two, Kaileigh had had major surgery on her stomach and heart, spent nearly a year in the hospital, and exhausted the $100,000 limit on lifetime benefits under her family's private insurance policy. In the year since her hospital discharge, she returned to the hospital seven times, with each week's stay costing $9,000. Her father's salary as a truck driver was $3,200 over the annual limit for poverty-related Medicaid coverage. Kaileigh has Down's syndrome and had been on a feeding tube for so long that she does not know how to swallow or chew. She required a host of medical supplies and services, totaling $1,300 per month, with each feeding tube alone costing $25. By contrast, the cost of her care in an institution would have been $30,000 to $40,000 per year. Kaileigh was granted Medicaid by Massachusetts, which subsequently named its Katie Beckett option after her. Anne C. Wyman, Methuen Family Battles Health Care Bureaucracy, Boston Globe, Sept. 22, 1987, at 21; Anne C. Wyman, State Guarantees Care for Ill Methuen Child, Boston Globe, Oct. 3, 1987, at 78; see 130 Mass. Code Regs. § 519.007(A) (2007).

92 Pub. L. 97-248, § 134, 96 Stat. 324, 375 (1982) (codified at 42 U.S.C. § 1396a(e)(3) (2006); 42 C.F.R. § 435.225 (2010).

93 Cong. Research Serv., 103rd Cong., Medicaid Source Book: Background Data and Analysis (A 1993 Update) 236 (Comm. Print 1993).

94 42 U.S.C. § 1396a(e)(3); 42 C.F.R. § 435.225.

95 42 U.S.C. § 1396a(10)(e)(3)(B)(i).

96 42 C.F.R. § 435.225(a).

97 Semansky & Koyanagi, supra note 89, at 338.

98 Cf. Bazelon Ctr. for Mental Health Law, Avoiding Cruel Choices: A Guide for Policymakers and Family Organizations on Medicaid's Role in Preventing Custody Relinquishment Table 1 at 20 (July, 2005).

99 See infra Appendix.

100 Tennessee's Medicaid program covers all newborns for the first year of life regardless of household income; children from ages one through six in households with income up to 133% of the federal poverty level; and children from ages six to age nineteen in households with income up to 100% of the federal poverty level. Tennessee also provides Medicaid coverage for children under age nineteen in households with income below 200% of the poverty level whose regular Medicaid coverage is ending, who do not have access to medical insurance through a family member's employment, and who have a health condition that prevents the family from purchasing private insurance, and for children under age twenty-one who are “chronically handicapped” by reason of a physical disability in families with income below 200% of poverty. TennCare, Major Medicaid Eligibility Categories in Tennessee, tn.gov, http://www.tn.gov/tenncare/mem-categories.html; Tenn. Comp. R. & Regs. §§ 1200-11-3-.02(18) (2005), 1200-11-3-.03(4) (2005). Covered medical services for the group of children described in Rule 1200-11-3-.02 are “limited to those that directly relate to the diagnostic condition which made the child eligible.” Tenn. Comp. R. & Regs. § 1200-11-3-.04(1) (2005).

101 While the District of Columbia's Medicaid agency website includes a 1999 state plan document electing the TEFRA Medicaid option, no further information about the particular levels of care is available. D.C. Dep't of Health Care Finance, HCFA-PM-91-4TC, Attachment 2.2-A at 20 (approval date 06/25/99), available at http://dhcf.dc.gov/dhcf/frames.asp?doc=/dhcf/lib/dhcf/pdf/attachment_2_2a.pdf.

102 Supra note 92, 42 U.S.C. § 1396a (e)(3); 42 C.F.R. § 435.225.

103 A cursory review of Children and the Law casebooks reveals a lack of treatment of this area as well. See, e.g., Douglas E. Abrams & Sarah H. Ramsey, Children and the Law: Doctrine, Policy, and Practice (3d ed. 2007) (considering medical decision-making, medical neglect, and who pays for medical care as between parent and child but not access to medical insurance).

104 Bazelon Ctr. for Mental Health Law, supra note 10, at 20.

105 Semansky & Koyanagi, supra note 32, at 337.

106 Bazelon Ctr. for Mental Health Law, supra note 10, at 8. See also Semansky & Koyanagi, supra note 32, at 340.

107 See Chan et al., Minn. Dep't of Health, supra note 3, at 9.

108 Id. at 14.

109 Id. at 68.

110 Id. at 12.

111 42 U.S.C. § 1396a(a)(25)(C); 42 C.F.R. § 447.15.

112 Id. at 12.

113 Id. at 36.

114 See Ga. Dep't of Audits and Accounts Performance Audit Operations, Requested Information on the Katie Beckett Program in the Department of Community Health 1 (2007).

115 See State of N.H. Home Care for Children with Severe Disabilities, Performance Audit 1 (2004).

116 In May, 2006, the Idaho Legislative Services Office recommended a “thorough review of the criteria used to determine eligibility in the Katie Beckett program.” Idaho Legislative Services Office, Legislative Audits Report Follow-Up 1 (2006).

117 Ga. Dep't of Comm’y Health, A Snapshot of the Katie Beckett Program 1 (2008).

118 See Ga. Dep't of Audits and Accounts Performance Audit Operations, supra note 114, at 1.

119 Jamie Stephenson, House Votes “Yes” on Katie Beckett Bill, The New Hampshire Challenge, Spring 2004, at 1, 7.

120 Kevin Landrigan, Bill Would Let Disabled Kids Keep Home Care, The Telegraph, Mar. 11, 2004.

121 N.H. Rev. Stat. Ann. § 167:3-f (2005).

122 2009 Idaho Sess. Laws ch. 264 § 8-1 801 (directing Idaho Dep't of Health & Welfare to establish cost-sharing requirements for Medicaid Katie Beckett program).

123 See Robert Wood Johnson Foundation, Maine, State Coverage Initiatives, http://www.statecoverage.org/node/100/state_strategies (noting that in January, 2008, Maine received approval from CMS to implement a DRA cost-sharing state plan amendment for its Katie Beckett program). Premiums are imposed on households with income in excess of 150% FPL. See ME. Dep't of Health and Human Services, MaineCare Benefits Manual ch. X § 3.06 (2008); 10-144 ME. Code R. c. 332, § 5090 (1999).

124 Letter from Vivianne M. Chaumont, Dir., Neb. Div. of Medicaid and Long-Term Care, Dep't of Health and Human Servs. to the Governor, Legislature, and Medicaid Reform Advisory Council (Dec. 1, 2008) (announcing cost-sharing for Katie Beckett families effective July 1, 2010).

125 Rite Care Policy Updates, Rhode Island Kids Count (Jan. 16, 2009), http://archive.constantcontact.com/fs077/1101809402224/archive/1102407681121.html (noting that cost-sharing proposal for Katie Beckett program was removed from Governor's supplemental budget); Covering Kids and Families Rhode Island, Why Medicaid Matters to Rhode Island 5 (2006) (describing November 2005 work group review of Katie Beckett program level of care eligibility criteria and application process).

126 42 U.S.C. § 1396o(a)(3).

127 In Nevada, parents must reimburse the state Medicaid agency for services provided to their Katie Beckett children in an amount based on a percentage of their gross monthly income in excess of 200% of poverty, less certain deductions. Nev. Div. of Welfare and Supportive Servs., MAABD Program Manual, § 501 (2009). A “hardship waiver” is available if cost-sharing “would severely compromise the health, shelter or subsistence needs of their family.” Id. § 501(D). North Dakota's Children's Special Health Services program provides diagnostic services without cost-sharing regardless of family income and requires cost-sharing for treatment services for families with incomes above 185% of the federal poverty level. N.D. Dep't of Health, Children's Special Health Services, Family Handbook for Diagnostic and Treatment Services 3-4 (2009). A family's monthly cost-share is 1/12 of the amount that the family's income exceeds 185% of the annual FPL. Id. at 8.

128 See Ark. Sec’y of State, MS-TEFRA Waiver/Home Care for Children § 2700 (2003). Premiums are imposed on households with annual income over $25,000, and range from 1 to 2.75% of income. Id. § 27005 (2003); Appendix P TEFRA Premium Schedule.

129 Letter from Ray Hanley, Dir., Ark. Div. Medical Servs., to Mike Fiore, Dir., Div. Integrated Health Sys., CMS at 1 (July 18, 2002).

130 Letter from Vivianne M. Chaumont, Dir., Nebraska Division of Medicaid and Long-Term Care, Dep't of Health and Human Servs., to the Governor, Legislature, and Medicaid Reform Advisory Council (Dec. 1, 2008) (announcing cost-sharing for Katie Beckett families effective July 1, 2010).

131 Alabama's HCBS waivers applicable to children include nursing facility (elderly and disabled waiver) and ICF/MR (mental retardation and living at home waivers) levels of care. See Ala. Medicaid Agency, Alabama Home and Community-Based Waiver Services (last revised Apr. 2010), available at http://www.medicaid.alabama.gov/documents/Program-LTC/3D-3c-2-HCBS_Waivers_Matrix_Chart_revised_4-10.pdf.

132 Arizona's Long Term Care System for Children applies to children who qualify for a nursing facility or ICF/MR level of care and includes cost-sharing. Ariz. Medicaid Agency, Ariz. Health Care Cost Containment Sys. Health Ins. Div. of Member Servs., AHCCCS Health Insurance 7 (2010), available at http://www.azahcccs.gov/community/Downloads/resources/Description_of_AHCCCS_Programs.pdf.

133 Cal. Dep't Health Care Servs., List of Medi-Cal Waivers, www.dhcs.ca.gov/services/medi-cal/Pages/Medi-CalWaiversList.aspx (last visited Feb. 26, 2011).

134 See State of Conn. Long Term Care Servs. & Supports, Aging and Disability Res. Ctrs., Paying for Your Needs, Katie Beckett Waiver, ct.gov (2006), http://www.ct.gov/longtermcare/.

135 Colorado's Children's HCBS Waiver (formerly known as Katie Beckett) covers children who would otherwise require a hospital or skilled nursing facility level of care. Colo. Code Regs. §10-2505, § 8.506-8.506.11 (2007), available at http://www.sos.state.co.us/CCR.

136 Florida offers waivers for “medically complex children” and those who meet an ICF/MR level of care. Fl. Agency for Health Care Admin. Fl. Medicaid Summary of Services Fiscal Year 08/09 14, 103 (Aug. 2009).

137 Hawaii's waivers include the Medically Fragile Community Care Program (hospital, nursing facility, ICF levels of care), Developmental Disabilities/Mental Retardation, and HIV/AIDS. Haw. State Med., QUEST Division, Home and Community- Based Waiver Program(s), Quest Hawai’i, (2003-2007), http://www.med-quest.us/eligibility/EligPrograms_HCBW.html. State of Hawaii Children/Youth Under Age 21 Level of Care Evaluation form DHS 1147e (Jan. 2009).

138 Indiana offers three HCBS waivers for people who qualify for an ICF/MR level of care (support services; autism; people with developmental disabilities), as well as waivers for elderly and people with physical disabilities and people with traumatic brain injuries. See Marci Wheeler, Indiana's Home and Community Based Waivers, Indiana Resource Center for Autism (2007), http://www.iidc.indiana.edu/?pageId=555.

139 Illinois covers medically fragile and technology dependent children who would otherwise require a hospital or skilled nursing facility level of care. Ill. Dep't of Healthcare and Family Servs., HCBS Waiver for Medically Fragile/Technology Dependent Children, Control Number: (0278.90.R1.01), www.hfs.illinois.gov, http://www.hfs.illinois.gov/hcbswaivers/tdmfc.html (last visited Jan. 28, 2011). Illinois also offers waivers for children who meet an ICF/MR level of care. Ill. Dep't of Healthcare and Family Servs., HCBS Waiver for Medically Fragile/Technology Dependent Children, Control Number: (0464), www.hfs.illinois.gov, http://www.hfs.illinois.gov/hcbswaivers/supports_cyadd.html (last visited Jan. 28, 2011).

140 Iowa's HCBS waivers cover children with mental retardation, brain injury, physical disabilities, serious emotional disturbance, HIV/AIDS, and who are “ill and handicapped.” See Iowa Admin. Code r. 441-83.122(249A) (2009) (serious emotional disturbance); Iowa Medicaid Enter., Dept. of Human Servs., Medicaid Home and Community-Based Services Program Comparison Chart 1 (2011), available at http://www.ime.state.ia.us/docs/PgmComparison_HCBS.pdf.

141 Kansas offers waivers for medically fragile/technology dependent children, individuals age sixteen to sixty-four with physical disabilities, children with developmental disabilities who meet an ICF/MR level of care, and children with serious emotional disturbance. See Kan. Dep't of Social and Rehabilitation Servs., Technology Assisted Waiver, srs.ks.gov, http://www.srskansas.org/services/hcbs_tech-assistance.htm (last modified Sept. 15, 2010); Kan. Dep't of Social and Rehabilitation Servs., Physical Disability Services, srs.ks.gov, http://www.srskansas.org/services/hcbs_physical_disabilities.htm (last modified May 21, 2010); Kan. Dep't of Social and Rehabilitation Servs., Dev. Or Intellectual Disability Servs., srs.ks.gov, http://www.srs.ks.gov/services/Pages?DevelopmentalDisabilityServices.aspx (last modified May 21, 2010); Kan. Dep’t. of Social and Rehabilitation Servs., Serious Emotional Disturbance Servs., srs.ks.gov, http://www.srs.ks.gov/services/Pages/SeriousEmotionalDisturbance.aspx (last modified June 21, 2010).

142 Kentucky's HCBS waivers cover children who meet a hospital, nursing facility, or ICF/MR level of care. 907 KY. Admin. Regs. 1:160, § 4 (3)(b) (2008); 907 KY. Admin. Regs. 1:835 (2009).

143 Louisiana's Children's Choice and New Opportunities waivers provide coverage for children who qualify for an ICF/MR level of care. See La. Dep't of Health and Hospitals, Children's Choice Waiver, dhh.louisiana.gov http://www.dhh.louisiana.gov/offices/page.asp?ID=191&Detail=6656 (last updated Jan. 14, 2010); http://www.dhh.louisiana.gov/offices/page.asp?ID=191&Detail=5301 (last updated Jan. 14, 2010).

144 Maryland's “model waiver for disabled children” covers medically fragile children who would otherwise qualify for a hospital or nursing facility level of care. See Md. Dep't of Health & Mental Hygiene, Waiver Programs Overview, Maryland.gov (2002), http://www.dhmh.state.md.us/mma/waiverprograms/html/overview/htm. Maryland also offers an autism spectrum disorder waiver. Id.

145 130 C.M.R. § 519.07 (2004).

146 Maine Dep't of Human Servs., Program Eligibility Manual § 5090 (Apr. 2008).

147 Michigan Dep't of Human Servs., Program Eligibility Manual §§ 170-72 (Jan. 1, 2008).

148 Mississippi, Office of the Governor, Division of Medicaid, Miss. § 1915(c) Waiver CA-PRTF (Oct. 1, 2007) (psychiatric residential treatment facility level of care); Miss. Div. of Medicaid, Provider Pol’y Manual, HCBS/Mentally Retarded/Developmentally Disabled Waiver, § 67.02 (July 1, 2007).

149 Missouri offers three waivers for children with developmental disabilities who meet an ICF/MR level of care, the Sarah Lopez waiver, the comprehensive waiver, and the community support waiver, as well as an autism waiver. Dep't of Social Servs., Missouri's Guide to Home and Community-Based Services 18-20; Autism Waiver Implementation (Sept. 4, 2009), available at http://dmh.mo.gov/docs/dd/autismWVsum.doc; Mo HealthNet, Sarah Jian Lopez Waiver Manual, 2 (Oct. 1, 2009), http://kansascity.mo.networkofcare.org/dd/library/spmanual/Section%20H08%20Sarah%20Jian%20Lopez%20Waiver.pdf

150 Montana offers an HCBS “comprehensive” waiver for 2300 children with developmental disabilities per year. See Letter from Richard C. Allen, Assoc. Reg’l Admin., Div. of Medicaid and Children's Health Operations, CMS, to Mary Dalton, State Medicaid Dir. (Apr. 22, 2010) (approving developmental disabilities waiver); Letter from Suzanne Bosstick, Director, CMS to Mary Dalton (Dec. 29, 2008) (approving autism waiver).

151 New Jersey's HCBS waivers for children cover those who would otherwise qualify for an ICF/MR or nursing facility level of care or have AIDS/HIV. See N.J. Dep't of Health & Senior Servs. Aging & Disability Resource Connection: A Guide to Community-Based Long Term Care in New Jersey at 85-86.

152 New Mexico offers HCBS waivers for children with developmental disabilities who require an ICF/MR level of care; medically fragile children who require an ICF/MR level of care; and children who require a nursing facility level of care (“coordination of long terms services”). N.M. Code R. §§ 8.314.3, 8.314.5 (2010); N.M. Code R. § 8.307.1 (2010).

153 New York offers six different Medicaid home and community-based services “Care at Home” (CAH) waivers for children with disabilities: CAH I covers children with physical disabilities who qualify for a skilled nursing facility level of care, CAH II covers children with physical disabilities who are technology dependent or qualify for a hospital level of care, CAH III, IV, and VI cover children with developmental disabilities and complex healthcare needs who qualify for an ICF/MR level of care, and CAH V covers children previously on the waiting list for CAH I or II. N.Y. State Dep't of Health, Office of Med. Mgmt, Care at Home: A Handbook for Parents, at 3, 45-46 (2003); Memorandum from Sue Kelly, Deputy Comm’r, N.Y. Div. of Health and Long Term Care to Local Dist. Comm’rs (May 23, 1994). New York also offers a Medicaid home and community-based services waiver for children with serious emotional disturbance who would otherwise qualify for a long-term residential treatment facility or intermediate psychiatric inpatient care. N.Y. Office of Mental Health Div. of Children and Families, Home and Community Based Services Waiver Guidance Document, NY Gov., http://www.omh.state.ny.us/omhweb/guidance/hcbs/html/section_100_1.htm (last modified Apr. 7, 2009).

154 N.C. CAP/C Manual Sections 1,2,6,8,9, N.C. Div. Medical Assistance, (Aug. 2006), http://www.ncdhhs.gov/dma/services/capc.htm.

155 Ohio's HCBS waivers are limited to children with developmental disabilities who would otherwise qualify for an ICF/MR level of care. See Ohio Medicaid Fact Sheet, Home and Community-Based Waivers, Ohio Dep't of Job and Family Services, 2, 4 (May 2007), http://jfs.ohio.gov/ohp/bcps/FactSheets/HCBS_0507.pdf.

156 317 Okla. Health Care Authority § 40-1-1 (May 27, 1996).

157 Oregon offers a medically fragile waiver (hospital level of care), medically involved waiver (nursing facility level of care), and behavioral waiver (ICF/MR level of care). See Or. Admin. R. 411-350 (2010) (medically fragile); Or. Admin. R. 411-355 (2010) (medically involved); Or. Admin. R. 411-300 (2010) (behavioral).

158 55 Pa. Code §§ 140.601-140.604 (1977).

159 40 Tex. Admin. C. § 9.155 (ICF/MR), § 51.203 (Aug. 31, 2010) (Medically Dependent Children Program).

160 Utah offers an HCBS waiver for children who are technology dependent (which essentially provides only respite and case management services) and an ICF/MR waiver. Email from Rob Denton, Disability Law Ctr., to author (Sept. 12, 2008, 06:08) (on file with author). See also Utah Medicaid Provider Manual Section 2, Home and Community-Based Waiver Services for Individuals with Developmental Disabilities and Mental Retardation, Utah Dep't of Health, 2 (last updated Jan. 2005), http://health.utah.gov/medicaid/provhtml/table_of_contents.htm (follow “Non Traditional Medicaid Plan” hyperlink; then follow “Medicaid Provider Manuals” hyperlink; then follow “Home and Community-Based Waiver Services”); Utah Medicaid Provider Manual Section 2, Home and Community-Based Waiver Services for Technology Dependent, Medically Fragile Individuals, Utah Dep't of Health, 2 (last updated Oct. 2006), http://health.utah.gov/medicaid/provhtml/table_of_contents.htm (follow “Non Traditional Medicaid Plan” hyperlink; then follow “Medicaid Provider Manuals” hyperlink; then follow “Home and Community-Based Waiver Services).

161 State of Vt. Agency of Human Servs., Dep't of Disabilities, Aging, & Indep. Living, Div. of Disability & Aging Servs., The Bridge Program: Care Coordination for Children with Developmental Disabilities Guidelines, (2009), available at http://www.ddas.vermont.gov/ddas-policies/policies-dds/policies-dds-documents/bridge-program-guidelines.

162 Virginia offers three waivers for the ICF/MR level of care (mental retardation/intellectual disability, day support, and individual and family developmental disabilities support), as well as an elderly or disabled with consumer direction waiver (nursing facility), and technology assisted waiver. Jessica Cann et al., Virginia's Medicaid Waivers for Persons with Disabilities, Dep't of Med. Assistance Services, 4-7 (July 2007), http://www.dmas.virginia.gov/downloads/pdfs/ab-ltc_medicaid_waiver.pdf.

163 W. Va. Bureau for Behavioral Health & Health Facilities, Program Eligibility Criteria for the MR/DD Waiver Program (June 18, 2010), available at http://www.wvdhhr.org/bhhf/mrddwaiver/ProgramEligibility.asp.

164 Wash. Admin. Code § 388-845 (2009).

165 Wyoming provides HCBS waivers for children with developmental disabilities and serious emotional disturbance. See Wyoming Medicaid Rules Chapter 42 Children's Developmental Disabilities Home and Community Based Waiver, Wyo. Sec’y of St., (Dec. 29, 2006) (developmental disabilities); ch. 13 (mental health).

166 See, e.g., The National Health Law Program, Q &A: “Katie Beckett” Category of Eligibility for Medicaid”, Nat’l Health Law Program, n.11 (Nov. 2005), http://www.healthlaw.org/images/stories/QA/KatieBeckett-qanda2.pdf (noting that pursuant to 42 U.S.C. § 1396n(c), states may apply for home and community-based services waivers for individuals who would otherwise qualify for an ICF/MR level of care, but that, unlike the TEFRA option, such waivers allow states to limit the number of children participating).

167 For example, as of March 31, 2010, there were 27,810 children and adults on the waiting lists for two Ohio HCBS waivers. E-mail from Charles F. Flowers, Manager, Medicaid Dev. and Admin. to Danna Rodrigues (July 21, 2010, 11:25) (on file with author). In 2000, one Ohio waiver was currently serving applications that had been filed in 1993. State Hr’g Dec., Appeal No. 9936351/MED at 2 (Mar. 16, 2000). In 2010, there were 4,732 people on the waiver waiting list for New Mexico's developmental disabilities waiver and only 3,833 currently receiving services. Alexa Schirtzinger, Jackson's Legacy, Santa Fe Reporter (Feb. 24, 2010), available at http://www.sfreporter.com/santafe/article-5232-jacksons-legacy.html?current_page=3. The average waiting time for developmental disability waiver services in New Mexico was forty-eight months. Center for Personal Assistance Servs., Dep't of Social & Behavioral Sci., New Mexico Medicaid State Plan Personal Care Services Program 7 (Apr. 2006), available at http://www.pascenter.org/home_and_community/NewMexicoStateMedicaid.pdf. As of April, 2010, there are in excess of 500 children seeking services under Iowa's children's mental health waiver. 2010 Monthly Slot & Waiting List Data at 2 (Apr. 1, 2010). See also, e.g., 480 Neb. Admin. C. § 5-003.C1(a) (identifying “unavailability of a waiver slot” as a permissible reason to deny or terminate eligibility for services); Montana Dep't of Pub. Health & Human Servs., Home and Community Based Servs., HCBS 899-20 Waiting List Criteria Tool (Jan. 1, 2006); Colorado Dep't of Health Care Pol’y & Financing, Children's HCBS Waiver Program § 8.506.2 Waiting List Guidelines. New York parents are cautioned that “some waivers may have long waiting lists.” Care at Home: A Handbook for Parents at 20. By contrast, Arkansas's waiver does not cap enrollment. Centers for Medicare & Medicaid Services, Medicaid Waivers and Demonstrations List, Details for Arkansas TEFRA (noting that “[t]here is no enrollment cap and the demonstration currently serves approximately 2,600 children.”).

168 E-mail from Anne Swerlick, Fla. Legal Servs., to Jill Mark (Nov. 23, 2009, 06:11) (on file with author).

169 Connecticut Long-Term Care Needs Assessment, Executive Summary (Univ. of Conn. Health Ctr., Conn.), June 12, 2007, at 31, available at http://www.uconnaging.uchc.edu/assess/Executive%20Summary%20FINAL%20June%2030%202007.pdf. See also Paying for Your Needs Connecticut Medicaid Program, St. of Conn. Longterm Care Services & Supports, http://www.ct.gov/longtermcare/cwp/view.asp?a=1398&Q=299542&longtermcareNav=| (last visited Feb. 2, 2011) (noting “[t]here is a long waiting list for this program”).

170 Texas Council for Dev. Disabilities and Texas Office for Prevention of Dev. Disabilities, Texas Biennial Disability Report, Interest Lists: Time Spent Waiting for Services 24 (2008).

171 Id. at 23.

172 Id.

173 Mo. HealthNet, Sarah Jian Lopez Waiver Manual, 2 (Oct. 1, 2009), http://kansascity.mo.networkofcare.org/dd/library/spmanual/Section%20H08%20Sarah%20Jian%20Lopez%20Waiver.pdf.

174 E-mail from Melissa Knipp, MS, LCSW, Mental Health Manager, Mo. Dep't of Mental Health, Div. of Developmental Disabilities, to Danna Rodrigues (Aug. 19, 2010, 10:29) (on file with author).

175 Dave & Sandy Smith, The Sarah Jane Story Updates, The Sarah Jane Story (Aug. 7, 2007), http://thesarahjanestory.com/updates.html.

176 Dave & Sandy Smith, The Sarah Jane Story Updates, The Sarah Jane Story (Aug. 7, 2007), http://www.thesarahjanestory.com/history.html.

177 Id.

178 Id.

179 The Sarah Jane Story Updates, supra note 175.

180 Mich. Dep't of Human Servs., Bridges Eligibility Manual Children with Serious Emotional Disturbance (SED) Waiver § 172, (Oct. 1, 2010), http://wwwmfia.state.mi.us/olmweb/ex/bem/172.pdf.

181 Colo. Code Regs. § 2505-10 8.506.

182 E-mail from Reagan Bailey, Dir. of Legal Advocacy, Disability Rights Washington, to MaryBeth Musumeci (Sept. 12, 2008, 17:54); E-mail from Janet Varon, Executive Dir., Northwest Health Law Advocates, to MaryBeth Musumeci (Sept. 5, 2008, 15:35) (on file with author).

183 Children's Multidisciplinary Assessment Team, Fla. Dep't of Health, Statewide Operation Plan 69 (2007).

184 H.R. Rep. No. 97-757, pt. 1, at 10 (1982).

185 Reforms to the SSI medical disability criteria are beyond the scope of this Article and are an area that invites further analysis.

186 But see Ricci v. R.I. Dep't of Human Servs., C.A. No. PC 07-1968, 2008 LEXIS 35 (R.I. Super. Ct. Feb. 28, 2008) (reversing and remanding hearing officer's decision as arbitrary and capricious where hearing officer had granted Katie Beckett Medicaid eligibility based on meeting skilled nursing level of care in a prior case to an infant with spina bifida requiring catheterization, bracing, and physical therapy and failed to explain contrary conclusion based on same underlying facts in instant case); Flint v. Comm’r of Pub. Welfare, 589 N.E. 2d 1224, 1226-28 (Mass. 1992) (finding substantial evidence to deny Katie Beckett Medicaid eligibility for fifteen-year-old whose cognitive and developmental functioning were at under twelve months, with cerebral palsy, microcephaly, encephalopathy, seizure disorder, and Rett's Syndrome, and wheelchair bound, nonverbal, and completely dependent on others for activities of daily living, because she required skilled nursing care “on an intervention basis” rather than weekly). Rhode Island and Massachusetts's Katie Beckett program does not offer coverage for an intermediate level of care.

187 See Elizabeth M. Boggs, Who is Putting Whose Head in the Sand or in the Clouds As the Case May Be?, in Parents Speak Out: Views from the Other Side of the Two-Way Mirror, 68 n.2 (Ann P. Turnbull & H. Rutherford Turnbull III, eds., Charles E. Merrill Publ’g Co., 1978) (noting that the “term intermediate care facility was introduced in 1967 when Congress sought to define a level of care less than skilled nursing care but more than room and board”) (emphasis in original).

188 Nebraska's Katie Beckett program covers only children who require highly skilled care that is not normally available in a skilled nursing facility and is available in a hospital. Children must be ventilator-dependent, require complex respiratory/medical care (such as a tracheotomy), or have complex medical/rehabilitative needs that exceed a skilled nursing level of care. 471 Neb. Admin. Code § 12-014.07 (2008). Nebraska also offers Medicaid home and community-based services waiver programs for children who qualify for an intermediate care facility for mental retardation or nursing facility level of care. 480 Neb. Admin. Code §§ 6- 000 (Feb. 3, 1993), 7-000 (Aug. 2, 1992), 8-000 (Aug. 21, 1995); 5-003.B (June 8, 1998). 189 Vermont's TEFRA program is thus limited to “coordinat[ing] medical supplies, and sophisticated medical equipment, and provides skilled nursing care for technology-dependent beneficiaries.” Vermont Medicaid – Green Mountain Care, Vermont Assembly of Home Health and Hospice Agencies, http://www.vnavt.com/Medicaid%20Programs.htm. Vermont also offers Medicaid home and community-based services waivers for children with developmental delays, cognitive impairments, and autism; mental illness; and traumatic brain injury (limited to recent injuries, age sixteen and older). Fall ‘98, Vermont Family Voices, http://www.partoparvt.org/98fvv.html.

190 42 U.S.C. § 1396a(10)(A)(ii)(VI) (2006).

191 42 C.F.R. § 435.225(b)(1) (2009).

192 See, e.g., Mental Health Parity Act of 1996, 29 U.S.C. § 1185a (2008), 42 U.S.C. § 300gg-5 (2008).

193 See, e.g., Chan et al., Minn. Dep't of Health, supra note 3, at 70 (1998) (“If no other resources exist, this need becomes the family responsibility. If the family is unable to provide this service the child may go without the needed service.”).

194 See id. (noting the “need for necessary services does not disappear but, is shifted to another part of the service delivery system” and that costs of not providing services are “financial, physical, emotional and social and can last a lifetime.”).

195 Minn. Governor's Council on Developmental Disabilities, Governor Proposes to Eliminate TEFRA 134 Medicaid Coverage for Children with Disabilities 1 (Feb. 28, 1995), http://www.mnddc.org/past/pdf/90s/95/95-MNL-GPE.pdf.

196 Anne L. Henry, Minnesota Disability Law Ctr., Governor Proposes to Slash Health Care for Kids with Disabilities 6, 6 (1995), http://www.mnddc.org/past/pdf/90s/95/95-MNL-GPE.pdf. Ultimately, the Minnesota TEFRA option was not eliminated.

197 Robert Stevens & Rosemary Stevens, Welfare Medicine in America: A Case Study of Medicaid 142, 244 (1974).

198 Id. at 255 n.31

199 Notes from telephone conversation of research assistant Jill Mark with South Carolina TEFRA Coordinator Monica William (June 11, 2009).

200 S.C. Code Ann. of Regs. 126-365(N); see also S.C. Dep't of Health & Human Services Medicaid Policy and Procedures Manual § 305.04.03 (2008), https://medsweb.scdhhs.gov/mppm/HTML/Section300/Chapter%20305%20TEFRA.htm#Toc273629721 (providing that “[i]ndividuals requesting coverage under the TEFRA group must be certified to be in need of institutional care under one of the following levels: intermediate care, intermediate care for the mentally retarded, skilled care, or a level of care provided in a hospital,” but offering no further guidance about how to determine whether a child qualifies for a particular level of care). Similarly, Nebraska, which only covers children who qualify for a hospital level of care under its Katie Beckett program, reports that it does not have an application or assessment form. Rather, when a family applies for SSI or Medicaid, a social worker will refer the child to a pediatric nurse who “looks to see if the child requires a hospital level of care.” Telephone interview by Ashley Sawyer with Judy Kinnan (Mar. 26, 2009).

201 Mich. Dep't of Human Services Program Eligibility Manual § 170 (2008) (stating that “child requires a level of care provided in a medical institution (i.e., hospital, skilled nursing facility or intermediate care facility)” without any further guidance). Curiously, Michigan reports only covering ten children in its program in 2002, compared with 3,603 children in Minnesota, and 4,302 children in Wisconsin. Bazelon Center for Mental Health Law, Avoiding Cruel Choices: A Guide for Policymakers and Family Organizations on Medicaid's Role in Preventing Custody Relinquishment 20 (Nov. 2002). Thus, in practice, Michigan appears to be applying a much more restrictive definition of level of care. A 1992 report observed that 50-60% of children enrolled in Michigan's program were ventilator-dependent, and others required total parenteral nutrition, continuous peritoneal dialysis or continuous oxygen support with pulse oximetry. Haas, Dianne L., Historical Overview of the Development of Family-Centered, Community-Based, Coordinated Care in Michigan, 15 Issues in Comprehensive Pediatric Nursing 1, 12 (1992).CrossRefGoogle ScholarPubMed However, since 1983, Michigan has had a separate Family Subsidy Program that provides a monthly tax-exempt grant of $220 for families with annual incomes below $60,000 to cover special expenses for children who are severely mentally or multiply handicapped or who have autism. As of September 1991, 3,900 families participated in this program, while only 200 children with disabilities were served by the state's Medicaid program from 1988-1992. Id. at 5-6.

202 State of New Hampshire, Home Care for Children with Severe Disabilities, Performance Audit 1 (Apr. 2004) (state statute “does not include critical definitions such as what constitutes a severely disabled child.”); see also Hearing on HB 1428-FN, N.H. Senate Comm. on Pub. Affairs 52 (Apr. 21, 2004) (testimony of Director of Audit Division, Office of Legislative Budget Assistant, noting that definition is “very vague”).

203 E-mail from Linda Lowe, Esq., Health Policy Specialist, Georgia Legal Services Program, to Jill Mark (June 8, 2009 10:46) (on file with author) (referencing adult nursing home level of care criteria in Ga. Dep't of Cmty. Health, Div. of Medical Assistance, Policies and Procedures for Nursing Facility Serv., Part II, ch. 700 (Apr. 1, 2009)).

204 See State of New Hampshire, supra note 202, at 18 (noting that “[a]dministrative rule He-M 401.06 relates to eligibility criteria for adults with severe mental illness and does not appear to be appropriate for children”).

205 16-5000-5100 Del. C. Reg. § 25300.4; cf. Nev. Div. of Health Care Fin. and Policy, Medicaid Operations Manual § 603.4 (July 11, 2006) (“A child's condition requires the level of service provided by either a Skilled Nursing Facility or an Intermediate Care Facility. Age appropriate consideration must be incorporated into the assessment. Children are not normally considered to meet a LOC unless the diagnosis and symptoms require medical treatment, intervention or oversight seven days per week.”). Language requiring “at least three functional deficits” to meet this level of care was subsequently removed. Memorandum from John A. Liveratti, Chief of Compliance. Div. of Health Care Fin. and Policy, to Custodians of Medicaid Operations Manual (Nov. 12, 2008).

206 See Del. Div. of Social Services Manual § 25400.4 (May 2002).

207 See, e.g., In re H.B., DCIS No. 5000881757 (Del. Dep't of Health & Soc. Servs. Mar. 31, 2004) (affirming termination of eligibility for child with, inter alia., hypotonia, asthma, spina bifida); In re G.D., DCIS No. 6001647368 (Del. Dep't of Health & Human Servs. Apr. 11, 2003) (affirming denial of eligibility for child with developmental disabilities after suffering stroke in utero); In re C.L., DCIS No. 8000537285 (Del. Dep't of Health & Human Servs. May 16, 2003) (reversing decision to terminate eligibility for child with “serious congenital and acquired heart conditions”); In re L.B., (Del. Dep't of Health & Human Servs. Oct. 25, 1996) (reversing decision to terminate eligibility for child with, inter alia., spina bifida and paraplegia).

208 E. F.R. v. Meconi, C.A. No. 07A-12-004 RFS (Del. Super. filed June 9, 2008); In re E. F.-R., DCIS No. 2003557226 (Del. Dep't of Health & Human Servs. Nov. 8, 2007); In re C.S., DCIS No. 0003573604 (Del. Dep't of Health & Human Servs. 2007).

209 S.D. Admin. R. 67:46:09:06 (2010).

210 Alaska Admin. Code tit. § 140.510(b) (2011).

211 See, e.g., In re D.D., DCIS No. 6000391867 (Del. Dep't of Health & Human Servs. Dec. 30, 2003) (reversing state Medicaid agency's decision to terminate eligibility for child with cystic fibrosis); cf. In re B.H. (Del. Dep't of Health & Human Servs. Feb. 18, 2004) (terminating eligibility for child with cystic fibrosis).

212 Cystic Fibrosis Found., About Cystic Fibrosis, Frequently Asked Questions, Is there a cure for cystic fibrosis?, http://www.cff.org/AboutCF/Faqs/#Is_there_a_cure_for_cystic_fibrosis? (last updated Oct. 20, 2009). The Cystic Fibrosis Foundation is a non-profit organization whose mission is “to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease.” About the Foundation, Cystic Fibrosis Found., http://www.cff.org/aboutCFFoundation/ (last updated May 27, 2010).

213 Cystic Fibrosis Found., About Cystic Fibrosis, What You Need to Know, http://www.cff.org/AboutCF/ (last visited Jan. 29, 2011).

214 Id.

215 See Nicholas Hobbs, James M. Perrin & Henry T. Ireys., Chronically Ill Children and Their Families 17 (1st ed. 1985) (Although there is no cure for [cystic fibrosis], its care has been greatly improved through comprehensive treatment programs that include pancreatic enzyme replacement, frequent use of antibiotics, and physical and respiratory therapy to keep lungs as clear and functional as possible.”).

216 I represented this child, whose father worked full-time at a job that did not offer medical insurance. Happy Harry's Pharmacy, Prescription Price Quote (Nov. 20, 2003) (on file with author).

217 Id.

218 See, e.g., Cystic Fibrosis Found., Airway Clearance Techniques, http://www.cff.org/treatments/Therapies/Respiratory/AirwayClearance/ (last visited Jan. 29, 2011).

219 See, e.g., U.S. Dep't of Health & Human Serv., Treatment for Cystic Fibrosis, Treatment for Digestive Problems, Nat’l Heart Lung and Blood Inst. http://www.nhlbi.nih.gov/health/dci/Diseases/cf/cf_treatments.html (last visited Jan. 29, 2011).

220 See, e.g., Am. Ass’n for Respiratory Care, Lung Diseases, Cystic Fibrosis. Current Treatments, yourlunghealth.org (May 26, 2005), http://www.yourlunghealth.org/lung_disease/cystic_fibrosis/treatment/index.cfm?CFID=18219691&CFTOKEN=72556214.

221 See, e.g., U.S. Nat’l Library of Med. & U.S. Nat’l Insts. of Health, Cystic Fibrosis, Possible complications, MedlinePlus, http://www.nlm.nih.gov/medlineplus/ency/article/000107.htm#Complications (last updated July 14, 2010).

222 In re A.J., DCIS No. 9003050892 (Del. Dep't of Health & Soc. Servs. Mar. 21, 2007).

223 In some cases, an administrative hearing officer's decision restored Medicaid coverage based on either a substantive finding of eligibility or a procedural due process violation. In others, the state Medicaid agency agreed to settle the case in advance of a hearing.

224 Tammy W. v. Hardy, 681 F. Supp. 2d 732, 734 (S.D. W. Va. 2010).

225 Id. at 734.

226 Id. at 735 (emphasis in original).

227 Id. at 736-37.

228 See, e.g., 16-5000-5100 Del. Admin. Code § 25150 (2011). But see Minn. Stat. § 256B.055, subdiv. 12(a) (2010) (permitting the commissioner to elect, based on the recommendation of the state's health care professionals, to extend review up to a maximum of four years).

229 42 C.F.R. § 435.1009 (2006) [section amended by 71 FR 39225, retroactively effective July 6, 2006].

230 In re H.H., DCIS No. 8001923586 (Del. Dep't of Health & Human Servs. Dec. 4, 2003); see also In re J.S., DCIS No. 1001443112 (Del. Dep't of Health & Humans Servs. Aug. 8, 2002) (child with encephalopathy and “mental handicap”); In re T.L., DCIS No. 166032M1 (Del. Dep't of Health & Soc. Servs. Apr. 2, 1998) (reversing and remanding decision to deny eligibility for child with severe encephalopathy, moderate mental retardation, and cognitive, motor, and behavioral disabilities); In re J.L., DCIS No. 151936M1 (Del. Dep't of Health & Human Servs. Jan. 17, 1997) (affirming decision to deny eligibility for child with moderate mental retardation); In re K.E., DCIS No. 117713M1 (Del. Dep't of Health & Human Servs. Aug. 16, 1996) (reversing decision to terminate eligibility for child with mild mental retardation, ADHD, ODD, and developmental articulation disorder).

231 Decision of the State Hearing Officer, Action No. 08-BOR-745 at 3 (W.Va. Dep't of Health & Human Res. Bd. of Review Apr. 16, 2008).

232 Id. at 8.

233 W. Va. Dep't of Health & Human Res., Board of Review, Action No. 05-BOR-6991, at 6, 10 (2006).

234 Id. at 6, 8.

235 Id. at 6.

236 See Bazelon Center for Mental Health Law, supra note 59, at 1.

237 Id. at 2.

238 See Semansky & Koyanagi, supra note 32, at 340; Bazelon Center for Mental Health Law, supra note 59, at 8.

239 Johanna Keely, TEFRA Medicaid Option for Children with Mental Illness, Nat’l Conference of State Legislatures LegisBrief, vol. 11, no. 13 (Mar. 2003).

240 See Ga. Dep't of Comm’y Health, Div. of Medical Assistance, Part II: Informational Manual: TEFRA/Katie Beckett Deeming Waiver, at 39-43 (2006), available at http://dch.georgia.gov/vgn/images/portal/cit_1210/26/56/46098632Katie_Beckett_Manual.pdf (denial letters due to primary psychiatric condition diagnosis). Tennessee also explicitly bars “children who are diagnosed as psychotic” from its Children's Special Services Medicaid coverage group for children in families with income up to 200% of poverty who are “chronically handicapped.” Tenn. Comp. R. & Regs. §§ 1200-11-3-.02(5), (18) (2005).

241 Note that Tennessee's program is not a TEFRA Medicaid option but rather a state program that covers children in households with income below 200% FPL, and who are uninsurable due to health condition until age nineteen, or chronically disabled until age twenty-one, but not deaf, blind, or “psychotic.” Tenn. Comp. R. & Regs. § 1200-11-3-.02(5), (18) (2005).

242 See Home Care Initiatives Unit, Community Care Section, N.C. Division of Medical Assistance, North Carolina Medicaid Community Alternatives Program for Children (CAP/C) Manual § 1.1 (2006).

243 Notice of State Rule-Making: Public Input for Proposed and Adopted Rules, Weekly Rule-making Notices (Bureau of Corps., Elections and Comm's July 2, 2008) (announcing Adopted Rule No. 2008-273), available at http://www.maine.gov/sos/cec/rules/notices/2008/070208.htm.

244 Id.

245 See Children's Mental Health Waiver (CMHW) Home Page, Wyo. Dep't of Health, http://wdh.state.wy.us/mhsa/treatment/waiverindex.html (follow “Click here to see how the waiver can work” hyperlink).

246 Id.

247 Id.

248 Id.

249 See id.

250 See Chan et al., Minn. Dep't of Health, supra note 3, at 4.

251 See id.

252 Id. at 53.

253 See Weaver v. Reagan, 886 F.2d 194, 199 (8th Cir. 1989) (reaffirming holding that “decision of whether or not certain treatment or a particular type of surgery is ‘medically necessary’ rests with the individual recipient's physician and not with clerical personnel or government official”); Collins v. Hamilton, 349 F.3d 371, 376 n.8 (7th Cir. 2003) (holding that a state's discretion to exclude services that have been deemed medically necessary under EPSDT by a treating provider has been “circumscribed by the express mandate of the statute.”); Pediatric Specialty Care v. Ark. Dep't of Human Servs., 293 F.3d 472, 481 (8th Cir. 2002) (holding that “after [mental health] clinic staff perform a diagnostic evaluation of an eligible child, if the [mental health] physician prescribes early intervention day treatment as a service that would lead to the maximum reduction of medical and physical disabilities and restoration of the child to his or her best possible functional level, the Arkansas State Plan must reimburse the treatment.”); Rosie D. v. Romney, 410 F. Supp. 2d 18, 26 (D. Mass. 2006) (observing that “[c]ourts construing EPSDT requirements have ruled that so long as a competent medical provider finds specific care to be ‘medically necessary’ to improve or ameliorate a child's condition, the 1989 amendments to the Medicaid statute require a participating state to cover it,” and “if a licensed clinician finds a particular service to be medically necessary to help a child improve his or her functional level, this service must be paid for by a state's Medicaid plan pursuant to the EPSDT mandate”) (citations omitted); S.D. v. Hood, 2002 WL 31741240, at *7 (E.D. La. 2002), aff’d 391 F.3d 581 (5th Cir. 2004) (finding no support for a determination that EPSDT treatment was not medically necessary when the sole evidence supporting this conclusion was offered by a doctor who had never examined the child seeking Medicaid services and who did not have the same qualifications as the child's treating experts); Urban v. Meconi, 930 A.2d 860 (Del. Super. 2007) (holding that substantial weight must be given to treating physicans’ opinions in Medicaid context); see also S. Rep. 89-404 (1965) reprinted in U.S.C.C.A.N. 1943, 1986 (noting that “[t]he physician is to be the key figure in determining utilization of health services … it is a physician who is to decide upon admission to a hospital, order tests, drugs and treatments.”).

254 See DiPolito, Samantha A., Comment, Olmsted v. L.C.—Deinstitutionalization and Community Integration: An Awakening of the Nation's Conscience?, 58 Mercer L. Rev. 1381, 1384 (2007)Google Scholar (noting that “[f]or over half of the twentieth century, people with mental and developmental disabilities were typically placed in large institutions … .”).

255 Chan et al., Minn. Dep't of Health, supra note 3, at 9.

256 See, e.g., Colker, Ruth, Anti-Subordination Above All: A Disability Perspective, 82 Notre Dame L. Rev. 1415, 1435-36 (2007)Google Scholar (describing investigation of living conditions at Cleveland State Hospital); Haas, supra note 201, at 2 (noting down-sizing of large long-term care institutions for children with developmental disabilities beginning in the late 1960s to early 1970s); Kanter, Arlene S., A Home of One's Own: The Fair Housing Amendments Act of 1988 and Housing Discrimination Against People with Mental Disabilities 43 Am. U. L. Rev. 925, 929 (1994)Google Scholar (describing development of community programs in lieu of institutionalization for people with developmental and mental disabilities); see also Smith, Jefferson D.E. & Calandrillo, Steve, Forward to Fundamental Alteration: Addressing ADA Title II Integration Lawsuits After Olmsted v. L.C. 24 Harv. J. L. & Pub. Pol’y 695, 703-04 (2001).Google Scholar

257 See Chan et al., Minn. Dep't of Health, supra note 3, at 10.

258 Olmsted v. L.C. ex rel. Zimring, 527 U.S. 581, 600 (1999).

259 See Nicholas Hobbs, James M. Perrin & Henry T. Ireys, Chronically Ill Children and Their Families: Problems, Prospects, and Proposals from the Vanderbilt Study 32 (1985) (observing that “[t]remendous advances in medical and surgical care have allowed most children with chronic illnesses to survive to adulthood”); Minnesota Dep't of Health Division of Family Health, Caring for Our Children: A Study of TEFRA in Minnesota 10 (1998) (“[T]echnological advances in medicine extended the lives of children with severe illnesses and ensured the survival of many children who would previously have died. Some of those children who survive because of these advances do so with lifelong illness or disability.”).

260 See Semansky, Rafael M. & Koyanagi, Chris, The TEFRA Medicaid Eligibility Option for Children with Severe Disabilities: A National Study, 31 J. Behav. Health Sci. & Res. 336 (2004)Google ScholarPubMed (noting that “[f]ew families can afford to pay for long-term intensive services out-ofpocket”).

261 Lehr, Donna H. & Greene, Jill, Educating Students with Complex Health Care Needs in Public Schools: The Intersection of Health Care, Education, and the Law, 5 J. Health Care L. & Pol’y 68, 90 (2002)Google Scholar (noting in passing the Katie Beckett option as part of the deinstitutionalization movement, but focusing on the IDEA's least restrictive environment mandate).

262 See, e.g., Paul L. Longmore, Why I Burned My Book and Other Essays on Disability 230-58 (2003) (observing that disability “is not simply caused by impairments or by physiological features that depart from the typical. Instead, disability is produced through the dynamic interplay of a complicated constellation of factors that includes, not only stigmatized physical and mental limitations and physiological differences, but also physical and architectural environments, social arrangements and cultural values, and the impact of public policies themselves” and that disability “is not an objective condition. It is a set of socially produced, highly mutable, historically evolving social identities and roles”).

263 Marilyn J. Field & Alan M. Jette, Dealing with Disability, Issues in Science and Technology Online, (2008), http://www.issues.org/24.2/field.html; see also Scotch, Richard K., Models of Disability and the Americans with Disabilities Act, 21 Berkeley J. Emp. & Lab. L. 213, 214 (2000)Google Scholar (noting that “[i]n the socio-political model, disability is viewed not as a physical or mental impairment, but as a social construction shaped by environmental factors, including physical characteristics built into the environment, cultural attitudes and social behaviors, and the institutionalized rules, procedures, and practices of private entities and public organizations.”); Kaplan, Deborah, The Definition of Disability: Perspective of the Disability Community, 3 J. Health Care L. & Pol’y 352, 356 (1999-2000).Google Scholar

264 Because HCBS waivers also require participants to meet a qualifying institutional level of care, converting TEFRA programs to HCBS waivers does not solve the institutional level of care definition problem. See, e.g., Jacob Jones, 01 DHR 2169 (N.C. Office of Admin. Hr’gs Oct. 4, 2002) (affirming state Medicaid agency's determination that child qualifies for skilled nursing, and not hospital, level of care under North Carolina's Community Alternative Program for Children Medicaid waiver). For example, states still must avoid vague definitions, or standards that encompass activities of daily living relevant to adults instead of children.

265 Sullivan, Kathleen M., The Justices of Rules and Standards, 106 Harv. L. Rev. 22, 57 (1992).Google Scholar

266 Id. at 58.

267 Id. at 59.

268 Id. at 59-61.

269 Id. at 66.

270 See Children's Special Health Services, N.D. Dep't of Health, Children's Special Health Services Medical Condition List (2010), available at http://www.ndhealth.gov/cshs/ [hereinafter CSHS, Condition List]. Unlike the Katie Beckett program, North Dakota's program covers children up to age twenty-one, with a $20,000 annual cap on spending per child. Children's Special Health Services, N.D. Dep't of Health, Diagnostic and Treatment Program Fact Sheet (2010), available at http://www.ndhealth.gov/cshs; Children's Special Health Services, N.D. Dep't of Health, Family Handbook for Diagnostic and Treatment Services 3 (2009), available at http://www.ndhealth.gov/cshs. North Dakota's Department of Medical Services Medical Needs Task Force considered the Katie Beckett eligibility option in 2005-06, and instead decided to pursue a waiver application. Medicaid Waiver Request for Children with Extraordinary Healthcare: Before the N.D. Budget Comm. on Human Servs. (N.D. 2006) (testimony of Maggie Anderson, Director of Medical Services, N.D Dep't of Human Servs.).

271 See CSHS, Condition List, supra note 270.

272 Cal. Code Regs. tit. 22, §§ 41800-72 (2010).

273 Alaska Admin. Code tit. 7, § 43.185(b) (2009) (defining “intermediate nursing services” in part as “the observation, assessment, and treatment of a recipient with long-term illness or disability whose condition is relatively stable and where the emphasis is on maintenance rather than rehabilitation …”). Alaska includes physical and occupational therapists, speech pathologists, audiologists, and certified physical and occupational therapy assistants, along with nurses as qualified supervisors for the provision of skilled care. Alaska Admin. Code tit. 7 § 43.180 (1996).

274 R.I. Dep't of Human Servs., Level of Care Criteria: Medical Assistance Eligibility Under the Katie Beckett Option 8, 15 (2006).

275 Idaho Admin. Code r. § 16.03.10.223 (2010).

276 016-20-02 Ark. Code R. § 27000 (LexisNexis 2002).

277 Deficit Reduction Act of 2005, Pub. L. No. 107-191, §§ 6061-62, 120 Stat. 4, 96 (2006). As of 2008, North Dakota, Iowa, and Louisiana have passed state legislation to elect the FOA option. Deborah Allen, The Catalyst Center, The Family Opportunity Act Medicaid Buy-In Option: What We’ve Learned 12 (2008).

278 See 55 Pa. C. §§ 140.601-140.604 (2008). Pennsylvania's program provides for an annual premium, which is calculated based upon, inter alia., the custodial parent's income if greater than 200% of the federal poverty level, less deductions for out-of-pocket medical and dental expenses, and can be waived if an “undue hardship.” Id. § 140.604.

279 Kevin Landrigan, Bill Would Let Disabled Kids Keep Home Care, The Telegraph, Mar. 11, 2004.

280 See Letter from Cindy Mann, Director, Center for Medicaid, SCHIP and Survey & Certification, to State Medicaid Director (Aug. 6, 2010) (detailing Affordable Care Act § 1915(i)).

281 42 U.S.C. § 1396a(e)(3).

282 In Dynamic Statutory Interpretation, William Eskridge observes that the “generality of statutory directives require[s] ‘interpretation’ when they [are] applied to concrete circumstances.” William N. Eskridge, Jr., Dynamic Statutory Interpretation 1-2 (1994). Legislation contains broad principles that must address various permutations of factual scenarios that arise over time. Statutes are inherently “aimed at big problems and must last a long time” and consequently embody “general, abstract, and theoretical” pronouncements. Id. at 48. The statutory language becomes “relatively particular, concrete, and practical” only when the terms are connected with a “fact-specific problem (a case or an administrative record).” Id.

Eskridge asserts that the “meaning of a statute is not fixed until it is applied to concrete circumstances, and it is neither uncommon nor illegitimate for the meaning of a provision to change over time.” Id. at 9. For example, the “purpose of a statute changes over time as the targeted population changes, often negating the assumptions critical to the original formulations of that purpose.” Id. at 30-31. In fact, in Eskridge's view, “[e]very time a statute is applied to a problem, statutory meaning is created.” Id. at 50. While “[a]t the time of its enactment, a statute usually resolves the most pressing legal questions that gave rise to it … [, i]nterpretation is required for those issues that were either unanticipated or politically sidestepped … [, resulting in] gaps or ambiguities.” Id. at 9. In such situations, Eskridge looks to Aristotle, who “urged that application of general statutes to unanticipated cases requires the interpreter to ‘correct the omission—to say what the legislator would have said had he been present, and would have put into law if he had known.’” Id. at 50.

283 Id. at 52.

284 Id. at 53.

285 Id.

286 Id. at 14.

287 Id. at 49.

288 Id.

289 Id. at 50.

290 TEFRA option converted to waiver in 2003.

291 Covers “acute care mental health facilities.” Also covers “alternative home placement” if risk of placement is due to child's medical condition.

292 Also has state-funded children's services program for certain medical conditions if family adjusted gross income is less than $40,000 or out-of-pocket medical expenses are expected to exceed twenty percent of income.

293 Offered TEFRA Medicaid as of 2005, but subsequently converted to HCBS waiver.

294 While the District of Columbia's Medicaid agency website includes a 1999 state plan document electing the TEFRA Medicaid option, no further information about the particular levels of care is available. D.C. Dep't of Health Care Finance, HCFA-PM-91-4TC, Attachment 2.2-A at 20 (approval date 06/25/99), available at http://dhcf.dc.gov/dhcf/frames.asp?doc=/dhcf/lib/dhcf/pdf/attachment_2_2a.pdf.

295 Also offers HIV/AIDS waiver.

296 Also offers waivers for brain injury, physical disabilities, HIV/AIDS, and “ill and handicapped.”

297 Waiver covers children with serious emotional disturbance.

298 Offers “All Kids” health insurance for children regardless of family income.

299 Also offers waivers for elderly and people with physical disabilities and traumatic brain injuries.

300 Also offers waiver for technology dependent children and waiver for people age sixteen through sixty-four with physical disabilities.

301 Waiver is for serious emotional disturbance.

302 Waiver is for “young children” (under age nine) with autism.

303 Also offers waiver for autism spectrum disorder.

304 Limited to serious emotional disturbance.

305 Waiver for serious emotional disturbance available in only fourteen out of eighty-three counties.

306 ICF/MD is not separately covered, but the state's definitions of hospital and nursing facility encompass mental health services required on a twenty-four hour monitoring or supervision basis.

307 Offers three HCBS waivers based on ICF/MR and also offers autism waiver.

308 TEFRA is hospital and nursing facility; waiver is ICF/MR and psychiatric residential treatment facility.

309 Coverage through state program, not Medicaid, and does not apply to mental health or mental retardation diagnoses.

310 NF is available through waiver only.

311 ICF/MR is available through waiver only.

312 TEFRA as well as two waivers cover ICF/MR level of care.

313 To the extent that SSI medical disability standards extend to an ICF level of care.

314 Covers children in households with income below 200% FPL, and uninsurable due to health condition until age nineteen, or chronically disabled until age twenty-one, but not deaf, blind, or “psychotic.”

315 Waiver is for technology dependent children.

316 Also offer technology assisted waiver.

317 Also offers TBI waiver.

318 Previously had TEFRA; eliminated about seven years ago.

319 Waiver is ICF/MR only; TEFRA covers hospital, SNF, and ICF/MR.

320 Limited to diagnosis of serious emotional disturbance.