The Disability Law Center’s
Protection and Advocacy Agency Access Authority
The Disability Law Center (DLC) is the federally mandated Protection and Advocacy (P&A) agency for Massachusetts. The P&A system is a national network of disability rights agencies investigating abuse and neglect and providing legal representation and other advocacy services to people with disabilities. To aid P&A systems in fulfilling their mandate, Congress gave them extensive access authority.
As the P&A for Massachusetts, DLC may:
II. Access to Facilities, Service Providers and Schools
A. Facilities Defined
The term facilities includes, but is not limited to, hospitals, nursing homes, community living arrangements (group homes, board and care homes, individual residences and apartments), juvenile detention centers, homeless shelters, and jails and prisons (including both general areas and special mental health or forensic units).
B. Service Providers
Service providers are intentionally undefined by statutes due to the rapidly changing nature of who provides services, the variation in delivery of supports and range of settings for delivery.
C. Schools Defined
A school constitutes a service provider or facility when it provides special education services to individuals with disabilities, regardless of whether it provides residential services to those individuals and regardless of whether all of its students have disabilities.
D. What Triggers Access
DLC is responsible for “monitoring compliance with respect to the rights and safety of individuals with… disabilities[.]” DLC’s monitoring authority may include “[i]nspecting, viewing and photographing all areas of the facility which are used by residents or are accessible to residents.” DLC’s monitoring responsibility is separate and distinct from DLC’s responsibility to investigate allegations of abuse or neglect.
b. Scope of Authority
DLC must have “reasonable unaccompanied” access to service providers for monitoring. This includes, at minimum, having access during normal work and visiting hours. Although DLC must be able to monitor all facilities, DLC will attempt to do so in a manner which does not interfere with existing facility programs.
2. Providing Information and Training
DLC is responsible for providing information and training on any issue applicable to persons with disabilities, including individual rights and the P&A system.
b. Scope of Authority
DLC must have “reasonable unaccompanied” access to service providers for routine circumstances. This includes areas which are used by individuals with disabilities and are accessible to individuals with disabilities at reasonable times and, at minimum, includes access during normal work and visiting hours. Although DLC must be able to provide information, it will attempt to do so in a manner which does not interfere with existing facility programs.
3. Investigation of Abuse and Neglect
DLC must “have reasonable unaccompanied access to individuals with… disabilities at all times necessary” to investigate allegations of abuse and neglect.
verbal, nonverbal, mental and emotional harassment; rape or sexual assault; striking; the use of excessive force when placing such an individual in bodily restraints; the use of bodily or chemical restraints which is not in compliance with Federal and State laws and regulations; any other practice which is likely to cause immediate physical or psychological hart or result in long term harm is such practices continue; or an act that DLC determines, in its discretion, is a violation of an individual’s legal rights that amounts to abuse, such as if an individual is subject to significant financial exploitation.
Neglect includes failure to:
establish or carry out an appropriate individual program plan or treatment plan (including a discharge plan); provide adequate nutrition, clothing, or health care to an individual with developmental disabilities; provide a safe environment which also includes failure to maintain adequate numbers of trained staff; or take appropriate steps to prevent self-abuse, harassment, or assault by a peer.
In addition to the strict definitions of abuse and neglect, DLC recognizes that its mandate involves protecting the human rights of people with disabilities. These human rights include, but are not limited to, independence, self-determination and integration. These values serve as a backdrop for all investigations of abuse and neglect.
DLC may investigate an allegation of abuse or neglect if a report is made or “if there is probable cause to believe that [an incident] occurred.” DLC determines probable cause, and this determination is not subject to review. DLC may rely on the experience and training of its personnel to decide whether there is “reasonable ground for belief” that a disabled individual has been abused or neglected or that the health or safety of the individual is in serious and immediate jeopardy.
In addition, DLC may rely on information that it discovers via monitoring or other available sources such as newspaper articles.
b. Scope of Authority
DLC must have access to individuals with disabilities at all times necessary to conduct a full investigation of an incident of abuse or neglect when (1) the incident is reported or a complaint is made through the P&A system; (2) the P&A system determines there is probable cause to believe an incident has or may have occurred; or (3) the P&A system determines that there may be imminent danger of serious abuse or neglect of an individual with a disability. DLC’s access to public and private service providers, programs in the state, and to all areas of the service provider’s premises that are used by individuals with disabilities or are accessible to them will be provided without advance notice and made available immediately upon request. This authority includes the ability to interview any individual with a disability, employee, or other persons who DLC might be reasonably believe to have knowledge of the incident under investigation.  DLC is not required to provide the name or other identifying information regarding the people with whom it plans to meet or justify or explain its interactions with such persons. DLC may conduct an investigation “independently or in cooperation with other agencies authorized to conduct similar investigations.”
III. Access to Information and Records
A. Records Defined
DLC has access to a wide range of records. Records may be “written or in another medium, draft or final, [and] includ[e] handwritten notes, electronic files, photographs or video or audio tape records.” They include:
§ “[P]rofessional, performance, building or other safety standards, and demographic and statistical information relating to service provider.”
B. When Records May Be Obtained by DLC?
DLC may access confidential records of a person with a disability if:
§ The person is a DLC client, either acting in his or her own capacity, or through a legal representative,
§ DLC received a complaint related to an individual who is unable to consent to access him or herself but does not have a legal representative, or
DLC may obtain these records if it an allegation is made or it
has probable cause to believe either an individual with a disability
was subject to abuse or neglect or the health or safety of the
individual is in serious and immediate jeopardy. DLC staff
making the probable cause determination may base the decision
on reasonable inferences drawn from their experience or training
regarding similar incidents, conditions or problems that are usually
associated with abuse or neglect.
In the case of death, DLC does not require probable cause to believe the death resulted from abuse or neglect or consent from another party in order to gain access to records.
C. Timing of Records Access
In most situations, a facility must provide the DLC with a person with a developmental disability’s records within three business days of a written request. In an emergency situation, where DLC has reason to believe that a person with a developmental disability either “is in serious and immediate jeopardy” or has died, a facility must allow DLC to have immediate access to the individual’s records no later than 24 hours after receiving a written request.
There are some instances in which DLC may share information from records. First, DLC may share information with the individual who is the subject of the records, provided the supervising mental health professional has not determined that such disclosure would be detrimental to the individual’s health. Second, DLC may make a public report about an investigation, provided it does so in a way that maintains confidentiality. Third, DLC may provide information to investigative or enforcement agencies, provided that it does so in a way that maintains confidentiality.
DLC must keep confidential the identity of individuals who report incidents of abuse or neglect or who furnish information that forms the basis for a determination that probable cause exists.
B. The Health Insurance Portability and Accountability Act of 1996 (HIPAA)
The regulations pertaining to HIPAA provide that "[a] covered entity may use or disclose protected health information to the extent that such use or disclosure is required by law and the use or disclosure complies with and is limited to the relevant requirements of such law." Disclosures of information to P & A agencies pursuant to the access authority established by P & A laws are "required by law” within the meaning of the regulations. The term “required by law” specifically includes statutes or regulations that require disclosure. Post-HIPAA authority has expressly confirmed that HIPAA-covered entities must disclose information to P & A agencies where required to do so by law. Courts have also interpreted other federal privacy statutes to be secondary to P&A access authority.
V. Denial of Access
A service provider must promptly provide a written statement explaining its reasons for denying or delaying DLC access within one business day after the expiration of its deadline. If the facility believes that DLC lacks authorization, the written statement must include the name, address and telephone number of the individual whose treatment is under investigation and his or her legal representative.
 This authority was first codified through the passage of the Protection & Advocacy for People with Developmental Disabilities (PADD) Act. 42 U.S.C. § 15043(a)(2)(B). Over time, Congress extended the protections of the PADD Act, incorporating them by 0reference into legislation protecting persons with other forms of disabilities. This includes both the Protection & Advocacy for Individual Rights (PAIR) Act, 29 U.S.C. § 794e(f)(1), and the Protection & Advocacy for Individuals with Traumatic Brain Injury (PATBI) Act. 42 U.S.C. § 300d-53 (eff. April 28, 2008). Similarly, Congress expanded the P & A system through passage of the Protection & Advocacy for Individuals with Mental Illness (PAIMI) Act 42 C.F.R. § 51.42(c)(2) and the Protection & Advocacy for Beneficiaries of Social Security (PABSS). The Ticket to Work and Work Incentives Improvement Act of 1999, as amended, 42 U.S.C. § 1320b-21 governs funding of P&A systems.
 42 U.S.C. § 15043(a)(2)(A)(i) (PADD); 42 U.S.C. § 10801(b)(2)(B); 42 U.S.C. § 10807(a) (PAIMI); 29 U.S.C. § 794e(f)(3) (PAIR). Under certain circumstances, P&As also have associational standing to bring claims on behalf of constituents. See e.g., Dunn v. Dunn, ____F. Supp. 3d ___, (M.D. Ala. 2016), 2016 WL 6949585 (Nov. 25, 2016).
 42 U.S.C. § 10802(3) (PAIMI definition); 42 C.F.R. § 51.2 (PAIMI: “Facility includes any public or private residential setting that provides overnight care accompanied by treatment services.”).
 See generally 45 C.F.R. § 1326.27 (PADD).
 Disability Rights New York v. N. Colonie Bd. Of Educ., No. 1:14-CV-0744, 2016 WL 1122055, at *5 (N.D.N.Y Mar. 21, 2016) (qualification as a service provider or facility under the P&A statutes does not require all student at a school to have a disability); Michigan Prot. & Advocacy Serv., Inc v. Flint Cmty. Sch., 146 F. Supp. 3d 897, 907 (E.D. Mich. 2015) (“Although ‘service provider’ is also an undefined term in the regulations, taking its ordinary meaning, the district certainly “provides services” to students with mental or emotional illnesses, developmental disabilities, and other relevant conditions.”); Disability Law Ctr. of Alaska, Inc. v. Anchorage Sch. Dist., 581 F.3d 936, 939 (9th Cir. 2009) (PAIMI and DD Act granted a P&A access to a school’s intensive special needs education class); Connecticut Office of Prot. & Advocacy for Persons with Disabilities v. Hartford Bd. Of Educ., 464 F.3d 229, 240 (2d Cir. 2006) (a school district is subject to the DD Act’s disclosure provisions, even if it does not provide residential services to students); Disability Rights Wis., Inc. v. Wis. Dep’t of Pub. Instruction, 463 F.3d 719, 726 (7th Cir. 2006) (a school with a special education program “easily” met the DD Act’s definition of a facility providing care and treatment).
 45 C.F.R. § 1326.27(c)(2)(ii) (PADD); 42 C.F.R. § 51.42(c)(2) (PAIMI). Courts have consistently affirmed P&As’ ability to conduct monitoring activities. See, e.g., Alabama Disabilities Advocacy Program v. SafetyNet Youthcare, Inc., 65 F. Supp. 3d 1312 (S.D. Ala. 2015), judgment entered, No. CIV A. 13-0519-CG-B, 2014 WL 714644 (S.D. Ala. Dec. 15, 2014), and on reconsideration in part, No. CVI.A. 13-0519-CG-B 2015 WL 566946 (S.D. Ala. Feb. 11, 2015) (residential treatment facilities that provide treatment for individuals with behavioral and mental health needs are subject to PAMII and must give its P&A reasonable access to its “moderate” treatment program); Pennsylvania Prot. and Advocacy, Inc. v. Royer-Graves Sch. for the Blind, 1999 WL 179797, *4 (E.D. Pa. March 25, 1999) (monitoring not limited to recipients of advocacy services); Michigan Prot. and Advocacy Serv., Inc. v. Miller, 849 F. Supp. 1202, 1208-1209 (1994) (when a facility falls under PADD or PAIMI, P&A has access authority).
 See, e.g., 42 C.F.R. § 51.42(c) (PAIMI).
 45 C.F.R. § 13.26.27(c)(2)(i) (PADD:“. . . P&As shall be permitted to post, in an area which individuals with developmental disabilities receive services, a poster which states the protection and advocacy services available from the P&A system, including the name, address and telephone number of the P&A system.”); 42 C.F.R. § 51.42(c)(1) (PAIMI).
 45 C.F.R. § 1326.19 (PADD); 42 C.F.R. § 51.2 (PAIMI); see also 45 C.F.R. § 1326.19 (PADD: “Abuse means any act or failure to act which was performed, or which was failed to be performed, knowingly, recklessly, or intentionally, and which caused, or may have caused, injury or death to an individual with developmental disabilities . . . ”).
 45 C.F.R. § 1326.19 (PADD); 42 C.F.R. § 51.2 (PAIMI); see also 45 C.F.R. § 1326.19 (PADD: “Neglect means a negligent act or omission by an individual responsible for providing services, supports or other assistance which caused or may have caused injury or death to an individual with a developmental disability(ies) or which placed an individual with a developmental disability(ies) at risk of injury or death . . . ”).
 See, e.g., 42 U.S.C. § 15001(a)(1) (PADD: “disability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilities to live independently, or exert control and choice over their own lives, and to fully participate in and contribute to their communities through full integration and inclusion in the economic, political, social, cultural, and educational mainstream of United States society . . . ”); 42 U.S.C. § 15009(a)(2) (PADD: least restrictive environment).
 42 U.S.C. § 10801(b)(2)(B) (PAIMI); 42 U.S.C. § 15043(a)(2)(B) (PADD); 42 C.F.R. § 51.42(b)(3) (PAIMI: when “[t]he P&A system determines that there is or may be imminent danger of serious abuse or neglect of an individual with mental illness.”); 45 C.F.R. § 1326.10.
 See Office of Prot. and Advocacy for Persons with Disabilities v. Armstrong, 266 F. Supp. 2d 303, 321-22 (D. Conn. 2003) (finding P&A independence in making the probable cause determination); Arizona Ctr. for Disability Law v. Allen, 197 F.R.D. 689, 693 (D. Ariz. 2000) (“[A] P&A is the final arbiter of probable cause for the purpose of triggering its authority to access all records for an individual that might have been subject to abuse or neglect” because if the state or provider could second guess this determination it would undermine the purpose of the P&A system); but see Disability Law Ctr. v. Discovery Acad., 2010 WL 55989, *4-7 (D. Utah 2010) (requiring a factual basis for probable cause determination; distinguishing Allen).
 45 C.F.R. § 1326.25(a)(2)(iii) (PADD: probable cause “can be the result of monitoring or other activities including media reports and newspaper articles”); Alabama Disabilities Advocacy Program v. J.S. Tawater Dev. Ctr., 97 F.3d 492, 498-99 (11th Cir. 1996) (holding that an anonymous telephone call providing sufficient evidence can be probable cause); Georgia Advocacy Office v. Borison, 520 S.E.2d 701, 703-04 (Ga. Ct. App. 1999).
 45 C.F.R. § 1326.27(b)(2) (PADD); Dunn v. Dunn, No. 2:14CV601-MHT, 2016 WL 324990 (M.D. Ala. Jan 27, 2016) (“[PAIMI] authorizes access, by protection and advocacy systems, to a health care provider’s quality-assurance records, which would otherwise be protected by state-law privileges.”).
 45 C.F.R. § 1326.27(b)(2) (PADD).
 45 C.F.R. § 1326.19 (PADD); 42 C.F.R. § 51.2 (PAIMI).
 42 C.F.R. § 51.41(c) (PAIMI). See also 45 C.F.R. § 1326.25(b)(1) (PADD: “This includes records stored or maintained at sites other than that of the service provider, as well as records that were not prepared by the service provider, but received by the service provider from other service providers.”); 42 U.S.C. § 10543(c) (PADD); 42 U.S.C. § 10806(b)(3)(A) (PAIMI); In the Matter of Disability Rights Idaho Request for Ada Cty. Coroner Records, Sonnenberg v. Disability Rights Idaho, No. 14-CV-00369-EJL, 2016 WL 878484 (D. Idaho Mar. 7, 2016) (“[R]ecords that the coroner compiled in investigation of patient’s death fell within definition of “records” under PAIMI.”).
 42 U.S.C. § 10543(b)(2) (PADD); 45 C.F.R. § 1326.25 (b)(2) (PADD: “The organizations whose reports are subject to this requirement include, but are not limited to, agencies in the foster care systems, developmental disabilities systems, prison and jail systems, public and private educational systems, emergency shelters, criminal and civil law enforcement agencies such as police departments, agencies overseeing juvenile justice facilities, juvenile detention facilities, all pre- and post-adjudication juvenile facilities, State and Federal licensing and certification agencies, and private accreditation organizations such as the Joint Commission on the Accreditation of Health Care Organizations or by medical care evaluation or peer review committees, regardless of whether they are protected by federal or state law.”); 42 U.S.C. § 10806(b)(3)(A) (PAIMI); 42 C.F.R. § 51.41(c)(2) (PAIMI). See also, Indiana Prot. and Advocacy Servs. v. Indiana Family and Social Servs. Admin., 603 F.3d 365, 382-83 (7th Cir. 2010) (PAIMI allows access to peer review records); Ctr. for Legal Advocacy v. Hammons, 323 F.3d 1262, 1270 (10th Cir. 2003) (P&A “should have access to peer review and quality assurance records”); Pennsylvania Prot. and Advocacy, Inc. v. Houstoun, 228 F.3d 423, 426 (3d Cir. 2000). State agencies investigating abuse and neglect must upon request, furnish to the P&A unredacted reports, including all information used and reviewed in preparing such reports. Disability Rights New York v. Wise, 117 F. Supp. 3d 54, 61 (N.D. N.Y. 2016).
 42 U.S.C. § 10543(a)(2)(I)(i) (PADD); U.S.C. § 10805(a)(4)(A) (PAIMI); see also 45 C.F.R. § 1326.19 (PADD: “The terms ‘legal guardian,’ ‘conservator,’ and ‘legal representative’ all mean a parent of a minor, unless the State has appointed another legal guardian under applicable State law, or an individual appointed and regularly reviewed by a State court or agency empowered under State law to appoint and review such officers, and having authority to make all decisions developmental disabilities [sic]. It does not include persons acting only as a representative payee, persons acting only to handle financial payments, executors and administrators of estates, attorneys or other persons acting on behalf of an individual with developmental disabilities only in individual legal matters, or officials or their designees responsible for the provision of services, supports and other assistance to an individual with developmental disabilities.”); 42 C.F.R. § 51.2 (PAIMI).
 42 U.S.C. § 10543(a)(2)(I)(iii) (PADD); 42 U.S.C. § 10805(a)(4)(C) (PAIMI); Disability Law Center, Inc. v. Riel, 150 F. Supp. 2d 294, 299 (D. Mass. 2001) (where there is a complaint or probable cause, P&As have the authority to access records needed to pursue legal, administrative, or other remedies for individuals with disability and to investigate incidents of abuse and neglect).
 42 U.S.C. § 10801(b)(2)(B) (PAIMI); 42 U.S.C. § 15043(a)(2)(B) (PADD); 42 C.F.R. § 51.42(b)(3) (PAIMI); 45 C.F.R. § 1326.10 (PADD).
 42 C.F.R. § 51.42(b)(3) (PAIMI); 45 C.F.R. § 1326.10 (PADD).
 42 U.S.C. § 15043(a)(2)(J)(i)(II) (PADD); 45 C.F.R. § 1326.25(a)(5) (PADD).
 42 C.F.R. § 51.46(a) (PAIMI).
 42 C.F.R. § 51.45(b)(1) (PAIMI).
 42 C.F.R. § 51.45(b)(2) (PAIMI).
 45 C.F.R. § 1326.28(b)(1)(iii) (PADD); 42 C.F.R. § 51.45 (a)(1)(iii) (PAIMI).
 45 C.F.R. § 164.512(a)(1).
 45 C.F.R. § 164.103.
 Prot. & Advocacy System Inc. v. Freudenthal, 412 F. Supp. 2d 1211, 1212 (D. Wyo. 2006) (“The Court holds that neither HIPAA nor the Medicaid Act bars the Plaintiff from accessing records at [a hospital] as long as the disclosure is required by a P & A act and P & A complies with all requirements set forth in the P & A act.”).
 E.g., Michigan Prot. and Advocacy Service, Inc, 849 F. Supp. at 1208 (P&A access authority controls over competing privacy rights of youth in DSS schools and centers, under Family Education Rights Privacy Act (FERPA), 20 U.S.C. § 1232g(b)).