The April 10, 2008 Federal Register contains an important Notice of Proposed Rulemaking (NPRM) from the Department of Health and Human Services’ (HHS) Administration for Children and Families entitled Developmental Disabilities Program, which is available at http://edocket.access.gpo.gov/2008/pdf/E8-7412.pdf. AHCA will write comments on the NPRM, which are due on June 9. To have your comments included in AHCA’s document, please send them to Melissa Temkin at mtemkin@ahca.org by Friday, May 30.

The rule proposes clarifications and new requirements to implement the Developmental Disabilities Assistance and Bill of Rights Act of 2000 (DD Act of 2000), the purpose of which is:

“to assure that individuals with developmental disabilities and their families participate in the design of and have access to needed community services, individualized supports, and other forms of assistance that promote self-determination, independence, productivity, and integration and inclusion in all facets of community life, through culturally competent programs…” including  (1) State Councils on Developmental Disabilities; 2) Protection and advocacy systems in each state; (3) University Centers for Excellence in Developmental Disabilities Education, Research, and Service; and (4) Funding for [national initiatives and technical assistance….]

Of the four programs mentioned above, the state-level protection and advocacy (P&A) systems have significant impact not only on developmental disabilities (DD) residential services providers, but on all LTC settings. By statute, there are P&A systems for DD (called PADD), as well as for individuals with mental illness (called PAIMI) and P&As for individuals that are not covered by PADD and PAMI, referred to as PAIR (P&As for individual rights.) As one or more of these systems apply to individuals residing in ICFs/MR, NFs, ALFs, and community settings, the content of this proposed rule could eventually broaden into provider types other than DD. 

In analyzing the proposed rule, the following items in particular relate to providers serving individuals with DD:

• HHS seeks comments (p. 19709) on whether the current process involving class action lawsuits provides adequate protection for individuals with DD; e.g., what criteria should be applied/clearance process followed to include an individual as a member of a class?
• Part 1386, “Formula Grant Programs” (pp. 19713-19718), in particular

A. Proposed revision of definitions (starting on p. 19713) including:

1. Abuse: “the threshold at which a violation of an individual’s rights constitutes abuse….. would be up to the P&A system to determine based on their intimate knowledge of the situation on behalf of the individual with DD;” 
2. Broadening the definition of “complaint” from the complaint being tied to an alleged abuse or neglect of an individual with DD to broader language indicating that the complaint relates to the status or treatment of an individual with DD. 
3. The definition of “facility” is deleted; instead, the NPRM now refers to “location[s] in which services, supports, or other assistance are provided to an individual with a DD. 
4. The term “full investigation” is revised to delete reference to “facilities” and “clients” to be replaced with the phrase “individuals with DD” as all eligible persons are to have access to P&A services, not just those where a client relationship has been established. 
5. The definition of “neglect is revised to indicate than an individual perpetrating the act of neglect now must be responsible for providing “services, supports or other assistance” rather than an individual providing “treatment or habilitation services.” 
6. The definition of “probable cause” is revised so that the P&A is the final arbiter of probable cause between itself and the organization or individuals from whom it is seeking records. 
7. The new definition of “service provider” refers to any individual (including a family member of an individual with DD) or a public or provide organization or agency that provides long-term supports or other assistance to individual(s) with DD which include, but are not limited to group homes, board and care homes, individual residence and apartments, nursing homes, etc.

B. Subpart C- Access to records, service providers and service recipients (starting on p. 19715), including that:

1. The Administration on Developmental Disabilities (ADD) proposes to create a new subpart C because accessing the records of individuals with DD plays an important role in supporting the P&A system in investigating suspected causes of abuse and neglect. In addressing key provisions related to P&As’ access to service providers, recipients and/or records, as well as consent issues, the NPRM rationalizes this approach by stating that it is consistent with the DD Act and with the 2nd circuit decision in “State of Connecticut Office of Protection and Advocacy for Persons with Disabilities v. Hartford Board of Education, Hartford Public Schools and Robert Henry, Supt. Of School.”
2. ADD also proposes to make the regulation on access to records consistent, where applicable, with the PAIMI regulation to ensure that all facets of the P&A system administered by the Department are subject to the same legally supportable requirements. The rule states that “ where we [ADD] exercise discretion, we do so in the belief that the proposed provisions are necessary to meet Congress' underlying intent to ensure necessary access to records to promote the System’s authority to investigate abuse and neglect and ensure the protection of rights.
3. Some of the key provisions include: 
   
1. The P&A can have access at reasonable times to any individuals with DD in a location in which services, supports, and other assistance are provided in order to investigate suspected cases of abuse and neglect. 
2. As the P&As work does not end when it investigates and brings to closure a specific incident of abuse or neglect or risk to health and safety, the rule proposes providing P&As with the authority to pr-actively monitor situations where abuse and neglect or risks to health and safety may occur…. “even under non-emergency situations (i.e., those not involving allegations of abuse or neglect, probable cause to believe that the health or safety of the individual is in serious and immediate jeopardy, or in the case of death.” 
3. In situations in which an individual’s health and safety are in immediate jeopardy or a death has occurred, no consent is required and access to records should be provided no later than within 24 hours. 
4. In incidences of suspected or reported abuse or neglect, risks to health and safety or in the case of a death of an individual with DD, service providers must be able to immediately provide contact information on individuals with DD, their parents, conservators, etc. to conduct an investigation. 
5. In the case of a deceased individual or where the P&A has probable cause to believe the individual is in serious and immediate jeopardy, the consent of another party is not necessary for access to the records. 
6. To simplify P&As’ task of establishing whether a decedent had DD, the proposed regulation provides “any individual who dies in a situation in which services, supports, or other assistance are, have been, or may customarily be provided to individuals with DD shall, for purposes of the P&As obtaining access to the individual’s records, be deemed an individual with DD. 
7. ADD proposes a new section named “Denial or Delay of Access,” which parallels the PAIMI regulation.  In emergency situations or in the case of a service recipient’s death, P&As may access the service recipient’s records within 24 hours after written request is made and without consent.  ADD proposes a one-business day deadline for providing written justification denying access. 
8. The NPRM proposes that P&A systems should not be required to provide notice to a service provider when they are coming to investigate an allegation of abuse or neglect when they have probable cause to believe that the health or safety of the individual is in serious and immediate jeopardy, or in the case of a death. However, notification is required for non-emergency investigations.
9. ADD proposes that P&As have the right to access service providers “at all times necessary” to conduct a full investigation, particularly when there is probably cause of imminent danger of serous abuse or neglect of an individual. To address this, ADD proposes to add new language: “A P&A shall also be permitted to attend treatment planning meetings …. Access to facilities shall be afforded immediately upon an oral or written request by the P&A system… except where complying with the request would interfere with treatment or therapy to be provided, service providers shall provide access within 24 hours of request. Access includes inspecting, viewing and photographing all areas of a service provider’s premises which are used by service recipients or are accessible to them.
10. p. 19717, “Frequently, a P&A will uncover… information about abuse and neglect which must be addressed promptly by other agencies with specialized State or Federal authority and/or greater resources, such as State licensing and certification agencies.... We recommend that such information be disclosed where possible with significant restrictions on redisclosure and only under those circumstances in which the P&As have obtained the information pursuant to the authority under the DD Act.”

• Subpart D- Federal Assistance to State Councils on DD, 1386.33 Protection of employee’s interests (p. 19734-5) states that “the State plan must assure fair and equitable arrangements to protect the interest of all institutional employees affect by actions under the plan to provide community living activities…. To the maximum extent practicable, arrangements must include provisions for…. Guaranteeing employment to employees affected by action under the plan to provide alternative living arrangements and employee training and retraining programs.
• There are other parts of the rule that may affect DD residential services providers, e.g., Subpart E “Practice and Procedure for Hearings”, beginning on p. 19736 of the rule. If you have comments on this or any other aspects of the proposed rule, please submit those comments to AHCA also.