On October 30, 2000 President Clinton signed into law the Developmental Disabilities Assistance and Bill of Rights Act of 2000

On October 30, 2000 President Clinton signed into law the Developmental Disabilities Assistance and Bill of Rights Act of 2000. The Act, Public Law 106-402, 114 Stat. 1677, repeals and replaces the old DD Act in its entirety. It is now codified at 42 U.S.C. 15001 et seq. Most significantly, the new Act expands P&A authority to gain access to records and individuals in order to investigate abuse and neglect.

The following is a summary and analysis of the substantive changes to the law relating to the P&A Program. All provisions in the prior statute not addressed below were carried forward in the new law without substantive change. (There are two differences between the new law’s access provisions and those contained in the recently amended PAIMI Act. These differences are outlined at the end of this memo.) A section-by-section analysis of the entire bill (created by Senate staff) can be found at http://www.protectionandadvocacy.com/private/DDActsecxsecSummary.htm

Summary of New P&A Provisions Contained in the DD Act

Effective Date

Based on rules of statutory interpretation, given that there is no effective date specified in the Act, the new law, including the P&A Program provisions, is effective immediately upon enactment. Further supporting an immediate effective date is the fact that the new P&A provisions, at least, are very straightforward and do not appear to require regulatory interpretation prior to their implementation.

Authorization Level (Section 145)

The authorization level set forth in the Act is $32 million for FY 2001, and such sums as may be necessary for each of fiscal years 2002 through 2007. The “authorization” represents the ceiling, but not the floor, for a legislative appropriation.

System Requirements (Section 143)

-Goals and Priorities (Section 143(a)(2)(C)): The P&A is required to develop annually for submission to HHS, and “take action with regard to goals (each of which is related to 1 or more areas of emphasis) and priorities, developed through data driven strategic planning.” The Act, at Section 102(2), contains a listing of “areas of emphasis” applicable to P&As, as well as to DD Councils and UAPs. The term “areas of emphasis” is defined as “the areas related to quality assurance activities, education activities and early intervention activities, child care-related activities, health-related activities, employment-related activities, housing-related activities, transportation-related activities, recreation-related activities, and other services available or offered to individuals in a community, including formal and informal community supports, that affect their quality of life.” Each of the listed activities is defined in Section 102. Prior law simply provided that the P&A shall develop annually a statement of objectives and priorities.

C Access to Records Over the Objection of the Guardian (Section 143(a)(2)(I)(iii)). Access is mandated to the records of an individual who has a (non-public entity) guardian, conservator or other legal representative in the case where such guardian or representative has, despite the P&A’s request, “failed or refused to act on behalf of the individual.” Records must be turned over in such a situation if the P&A has “probable cause to believe that such individual has been subject to abuse or neglect.” (The new law carries forward the requirement in the prior statute that P&As have access to records of an individual with a public guardian – without the need to make a request of the guardian – when there is such probable cause or a complaint.)

Under prior law, access was permitted to the records of an individual with a guardian (other than a public guardian) in the circumstance where the guardian failed or refused to act, only if there was probable cause to suspect that “the health or safety of the individual is in serious and immediate jeopardy” (or the P&A had received a complaint). (The PAIMI Act, as amended, contains such a provision -- see discussion below.) Thus, the new Act establishes a considerably lower threshold for access to records in this case – a probable cause belief regarding “simple” abuse or neglect – versus the prior requirement of an immediate serious threat to health or safety.

[Note that the provision above relating to the guardian’s “fail[ure] or refus[al] to act on behalf of the individual” was contained in the prior statute and was interpreted by at least one court as permitting access to records based upon a guardian’s failure to act, as well as his or her affirmative refusal to consent to the release of records. Pennsylvania Protection & Advocacy, Inc. v. Royer-Greaves School for the Blind, 1999 WL 179797, *8 (E.D. Pa. March 25, 1999). ]

C Time Frame for Release of Records -- Three/One-day Requirement (Section 143(a)(2)(J)). P&As shall have access to the records of individuals with developmental disabilities “and other records relevant to conducting an investigation . . . not later than three business days after the system makes a written request of the records involved.” In addition, P&As are guaranteed access to records not later than 24 hours after a request – without consent from another party – where the P&A determines there is probable cause to believe that the health or safety of the individual is in serious and immediate jeopardy, or in any case of the death of an individual with a developmental disability. As noted above, with regard to the release of records where there is serious and immediate jeopardy, prior law required P&As to attempt to obtain the guardian’s consent before gaining access to records. And, the new law, in permitting access to records without consent in the case of a death, effectively adopts the interpretation of the courts. See Alabama Disabilities Advocacy Program v. J.S. Tarwater Development Center, 97 F.3d 492 (11^th Cir. 1996), which ruled that consent of a guardian is not required to access the records of a deceased ward, as the guardianship terminates at the death of the ward.

- Provision of State Medicaid Reports to P&As (Section 143(a)(3)): States are required to provide to the P&A within 30 days of availability a copy of independent reviews, under the Medicaid Act, of ICF/MRs within the state. Also, the state is required to provide to the P&A available information about the adequacy of health care and other services, supports and assistance provided to individuals with developmental disabilities served through home and community based waivers. Prior law requires submission of certain annual survey reports of ICF/MRs, but states’ obligation to create these reports was rescinded by the Balanced Budget Act of 1997.

Governing Board

- Membership (Section 143(a)(1)(B) and (C)): Under the new statutory provisions, a majority of the membership of multi-member P&A governing boards must be individuals with disabilities, including individuals with developmental disabilities, or parents, family members, guardians, advocates, or authorized representatives of such persons. Prior law required only that the board must “include individuals with developmental disabilities,” or their parents or other representatives. Additionally, a new provision states that boards may include a representative of the State Council on Developmental Disabilities. This amendment reverses the policy of the Administration on Developmental Disabilities prohibiting DD Council representation on P&A boards.

- Terms of Office (Section 144(a)(3)): “The membership of the governing board shall be subject to term limits set by the system to ensure rotating membership.” The current statute does not address term limits; however, the regulations implementing the PAIMI Act specify that the terms of board members shall be limited to four years. The statutory amendment, granting discretion to P&As in this area, appears to effectively supersede the PAIMI regulation.

Miscellaneous

- Reports (Section 144(e)): Beginning with FY 2002, P&As are required to submit annually a report to HHS on the activities of the agency that describes the activities, accomplishments and expenditures of the P&A during the preceding fiscal year, including a description of the P&A’s goals, the extent to which they were achieved, barriers to their achievement, the process used for public input, the nature of the input and how the input was used. Somewhat different requirements were contained in the prior statute.

Reconciling Differences in the DD and PAIMI Act Access Authorities

Unfortunately, the recently enacted amendments to the PAIMI Act did not incorporate new access provisions like those set forth in the DD Act of 2000, which are discussed above. Indeed, these amendments did not affect at all the PAIMI Act’s access requirements – which are patterned after those contained in the repealed DD Act. Consequently, the new access authorities contained in the DD Act of 2000 are not reflected in the PAIMI Act. These provisions relate to the time frames for the release of records, and access to records without consent of other parties.

However, given Congress’ general intent to apply the DD and PAIMI Acts in a consistent manner, it may be argued that the time frames for the release of records established under the DD Act of 2000 should apply under the PAIMI Act as well. First, it is important to note that the PAIMI Act is silent on the issue of the timing for the release of records. And the Act’s implementing regulations merely provide for the release of records to the P&A "promptly." 42 CFR 51.41(a) ("Access to records shall be extended promptly to all authorized agents of a P&A System"). Thus, the application of the time frames under the DD Act to records of PAIMI-eligible clients would not be inconsistent with any express PAIMI Act or regulatory requirements.

Congress’ intent to apply the DD and PAIMI Act access provisions consistently – permitting reliance on the language of one statute to interpret the other – was affirmed in Alabama Disabilities Advocacy Program v. J.S. Tarwater Developmental Center, 894 F. Supp. 424, 428 (M.D. Ala. 1995), aff'd, 97 F.3d 492 (11th Cir. 1996). In Tarwater, the court, relying in part on language contained in the PAIMI Act, ruled that the DD Act authorizes P&As to access the records of deceased persons, despite the fact that such authority was not expressly spelled out in the DD Act itself. The defendant institution in that case asserted that such access to records was outside the scope of the DD Act, and used for support for this argument the fact that PAIMI Act, but not the DD Act, expressly provides for access to the records of “an individual who has died.” The court held that

[t]here is no evidence that the lack of this language in the Developmental Disabilities Act implies that Congress meant to exclude death from that Act’s record access

provisions. . . .. Further, what evidence there is points in the direction of including death in the Developmental Disabilities Act’s records access provisions. To begin with, legislative history suggests that the record access provisions of the two acts are meant to be “consistent.” S. Rep. 113, 100^th Cong., 1^st Sess. 24 (1987), reprinted in 1987 U.S.C.C.A.N. 781, 803-04. . . . Given this, the lack of explicit language in the Developmental Disabilities Act similar to that of the [PAIMI] Act cannot be given the meaning urged by the defendants. [894 F. Supp. at 428.]

Further, the preamble to the PAIMI Act’s regulations (which contains persuasive interpretative guidance) states that it is the goal of the Department of Health and Human Services “to ensure that all facets of the P&A system administered by the Department [PAIMI and DD Programs] are subject to the same requirements.” 62 Fed. Reg. 53549 (Oct. 15, 1997). The preamble further notes that “a basic principle of statutory construction is that where statutes govern similar substantive areas, and affect similar classes of individuals, courts often attempt to construe such statutes in pari materia (meaning, on like subject matter) and might interpret certain provisions of the DD Act as applying to the [PAIMI] Act as well.” Id (emphasis added).

Based on all of the above, the time lines for the release of records established in the new DD

Act arguably should be construed as applying under the PAIMI Act as well. (To date, neither the courts nor the Federal administering agencies have addressed this particular issue, and more research is needed before a definitive conclusion can be reached.)

In contrast, it is less clear that the new DD Act provisions relating to access to records without the consent of other parties can be applied under the PAIMI Act as well. The PAIMI Act and its implementing regulations contain provisions which are inconsistent with these DD Act access provisions. Thus, with regard to individuals who are exclusively eligible under the PAIMI Act, it appears that P&As will be unable to use their access authority to obtain records over the objection of a guardian (assuming the individual is not competent to consent to the release of his or her records) where the P&A has probable cause relating to “simple” abuse and neglect only. Also, in the case where there is probable cause to suspect serious and immediate jeopardy to health or safety, the P&A apparently will have to attempt to contact the guardian to obtain consent – although, as noted above, a denial of consent or a failure to respond will be sufficient to trigger access authority. (However, the courts have found that P&As are authorized access to the records of deceased persons without the consent of a guardian, assuming that, under state law, the guardianship terminates at the death. Alabama Disabilities Advocacy Program v. J.S. Tarwater Developmental Center, 97 F.3d 492, 497 (11th Cir. 1996).)

Application of DD Act Requirements to the PAIR Program

Finally, it is important to note that all the primary authorities contained in the DD Act of 2000 apply with equal force under the PAIR Program. That statutory program incorporates by reference the authorities contained in the DD Act. Specifically, the PAIR statutory language provides that P&As under the PAIR Program “have the same general authorities, including access to records . . . as set forth” in the DD Act. See 29 U.S.C. 794(e)(f)(2), which is section 509(f)(2) of the Rehabilitation Act.

[Note that the DD Act of 2000 contains, at section 401(b)(3)(C), the following amendment to the PAIR Program to update its references to the DD Act: "Subsections (a)(1)(B)(i), (f)(2), and (m)(1) of section 509 of the Rehabilitation Act of 1973 (29 U.S.C. 794e) are amended by striking `part C of the Developmental Disabilities Assistance and Bill of Rights Act (42 U.S.C. 6041 et seq.)' and inserting `subtitle C of the Developmental Disabilities Assistance and Bill of Rights Act of 2000'."]