Webinar Synopsis: DD Act Final Rule

On August 5, 2015, the Administration on Intellectual and Developmental Disabilities (AIDD), a division 

of the Administration for Community Living, hosted a public webinar about the final rule for the 

Developmental Disabilities Assistance and Bill of Rights Act (PL 106-402). The call included an

introduction from Administration on Disability (AoD) Commissioner Aaron Bishop and an overview of 

key provisions of the rule from AoD Policy Analyst Andrew Morris and AIDD Deputy Director Jennifer 

Johnson. A question and answer session followed. Highlights of the call are included below.

Download the webinar PowerPoint slides.

Introduction

Commissioner Bishop began the call by thanking participants and highlighting the importance of the rule 

and its role in addressing the challenges that individuals and entities have faced with the developmental 

disabilities (DD) network. He noted that the purpose of the rule was to clarify a number of issues for 

State Protection and Advocacy Systems (P&As), State Councils on Developmental Disabilities (DD 

Councils), and University Centers for Excellence in Developmental Disabilities (UCEDDs) as they 

implement the specific provisions of the DD Act.

Overview of Key Provisions

Background: The DD Act was reauthorized in 2000 and had previously been authorized in 1995. The 

previous DD Act rule was released in 1997, making this the first new DD Act rule in eighteen years and 

the first based on the 2000 reauthorization.

Updated Capacity Building Definition: Prior to 2000, only the UCEDDs were charged with capacity 

building. Per the 2000 reauthorization, all DD Act programs now engage in capacity building. The final 

rule includes an updated definition of capacity building that accounts for this change.

Projects of National Significance: In addition to the P&As, DD Councils, and UCEDDs, Projects of 

National Significance (PNS) are also authorized under the DD Act. The rulemaking process will not result 

in any significant changes to PNS, however. The rule makes one administrative change, no longer 

requiring PNS funding opportunity announcements to be printed in the Federal Register. This 

requirement is not a part of the federal statute; in the future, announcements will be released through 

the ACL e-mail listserv and other technical listservs.

P&A Authorities: The final rule does not give any new authority to P&As, whose current authority was

granted by the 2000 law. The rule does clarify the statute in some areas where P&As and the public have 

had questions.

P&A Access to Individuals and Records: P&As must often pursue legal action to achieve the access 

granted to them by law. While courts have generally sided with the P&As, legal battles can drain 

resources and delay time-sensitive investigations. The new rule details when consent is and is not 

required for P&As to have access to records and to individuals receiving services. 
P&A Access and Consent: In cases of death and suspected abuse or neglect, consent to gain access is 

not required. The only requirement is that the P&A provide written notice to a service provider 24 hours 

prior to access.

P&A Access to Records: The rule details the relationship of P&As to peer review records and to records 

covered by the Health Insurance Portability and Accountability Act (HIPPA) and the Family Educational 

Rights and Privacy Act (FERPA). It also addresses federal court decisions regarding access to records that 

have been made since 2000 when the DD Act was last reauthorized and since the notice of proposed 

rulemaking was issued.

PADD and Other P&A Programs: Protection and Advocacy for Individuals with Developmental 

Disabilities (PADD) is one of eight funding streams for P&As. Based on comments it received, AIDD 

worked to align PADD with other federal P&A programs to the greatest extent possible.

Definition of Service Provider: The final rule removes the definition of “service provider” included in the 

notice of proposed rulemaking. This change recognizes that “service provider” has an evolving 

definition. Under the law, any person or entity that provides services to an individual is a service 

provider.

P&As and Reporting: Chapters 1385 and 1386 of the rule address reporting requirements for the P&As. 

AIDD will conduct monitoring to ensure compliance with the law and the rule, and it will work with any

P&As that are not to achieve compliance.

DD Councils and Demonstration Projects: One notable change for DD Councils in the final rule is a time 

limit on demonstration projects. Some demonstration projects last 20 or more years. Such projects no 

longer fit the definition of a demonstration; they are established practices. The rule sets a five-year limit 

on demonstration projects and outlines requirements for projects to continue beyond five years. 

Requirements include providing data and a detailed explanation of why funding cannot be obtained 

from other sources.

DD Council State Plans: The DD Act requires non-interference from states and territories for DD Councils 

and P&As. Under the new rule, DD Councils are no longer required to seek approval of their state plans 

from the designated state agencies. DD Councils will have to show AIDD that they shared the plan with 

the designated state agency.

UCEDD Structure: The rule makes clear that a UCEDD is a freestanding entity that is part of, or 

associated with, a host university. There have been instances of universities attempting to take grant 

money from AIDD and spread it to different parts of the university, for other disability programs. The 

rule clarifies that this is not allowable.

Definition of “State” for UCEDDs: The rule clarifies the definition of “state” in the UCEDD portion of the 

statute. For the purposes of the statute, American Samoa and the Northern Mariana Islands are not 

considered states and cannot have freestanding UCEDDs. Through a partnership with Hawaii, both 

territories are a part of the Pacific Basin UCEDD.
For more information about the final rule, see the DD Act Final Rule Toolkit.

Webinar participants submitted the following questions during a brief Q&A session:

1. The final rule includes failure to develop a discharge plan as neglect. Will P&As have unlimited 

access to any ICS/IDD resident without a discharge to Community Services Plan under the 

guise of neglect?

As the rule says, the discharge plans are considered part of planning meetings, so I believe that is 

considered neglect if the person is discharged without a discharge plan. There are requirements in the 

rule that P&As have access to planning meetings and discharge plans.

2. Will the P&A have access to internal quality assurance reviews and reports? 

Yes. P&As have access to all records, including records not prepared by the service provider. So, it is all 

records that are in possession of the service provider’s property regarding that individual.

That includes peer review records, internal quality assurance reviews, and other reports regarding that 

individual. If the P&A is conducting an investigation or has probable cause to suspect abuse or neglect, 

the service provider has to provide access to those records, even if they are conducting an investigation.

3. If a complaint of discrimination comes into a hotline, does the rule allow for all information 

gathered to be disclosed?

The P&A has to follow the rule and the statute around confidentiality, so they cannot disclose 

information regarding an individual for an investigation. They have to meet the confidentiality 

requirements.

4. Regarding state (DD) Councils, is Partners in Policymaking considered a demonstration 

project? Does this fall under the five-year rule?

Currently, that depends on the Council. A Council can submit it as a demonstration project, or a Council 

can submit it as an activity. If councils do submit it as a demonstration project, the project time limit 

would apply. So this is an opportunity for a Council, in the new five-year state plan due next August, to 

determine which projects are demonstrations and which are activities of the Council.

5. Please review the section of the rule that strengthens independence (for DD Councils). 

The DD Act requires that states not interfere with either the Councils or the P&As in their operations as 

federal grantees under the DD Act. For Councils, designated state agencies are no longer required to 

sign off on a Council’s state plan. Councils will be required to show that they did show their state plan to 

the DSA, but the state does not approve it.