**Protection and Advocacy for Individuals with Developmental Disabilities**

**(PADD)**

Annual Statement of Goals and Priorities (SGP)  

Annual Program Performance Report (PPR)

*Revised September 3, 2015*

Administration on Intellectual and Developmental Disabilities (AIDD)

Administration for Community Living

U.S. Department of Health and Human Services

Table of Contents

Part I:  Demographics4

Interventions on behalf of individuals4

A.  Individuals Served4

B.  Problem Areas/Complaints of Individuals Served4

C.  Gender of Individuals Served6

D.  Living Arrangements of Individuals Served7

E.  Reasons for Closing Individual Intervention Files7

F.  Intervention Strategies Used in Serving Individuals8

G.  Age Range of Individuals Served8

H.  Primary Disability of Individuals Served8

Race and Ethnicity9

I.  Racial and Ethnic Diversity of Individuals Served9

Intervention Benefitting Groups10

J.  Groups Served10

K.  Problem Areas/Complaints of Groups Served10

L.  Living Arrangements Targeted by Groups Interventions11

M.  Reasons for Closing Group Cases/Projects11

N.  Intervention Strategies Used in Group Cases/Projects11

O.  Age Ranges Targeted by Interventions for Groups12

P.  Race/Ethnicity of Groups Served12

Part II:  Statement of Goals and Priorities13

A.  Report on FY 2014 Statement of Goals and Priorities (SGP)13

B.  Priority Setting Process19

C.  FY _ _ _ _ Statement of Goals and Priorities (SGP)21

D.  Description of P&A Operations23

Part III: Results of P&A Activity23

A.  End Outcomes of P&A Activity23

B.  Overview of How Many People with Disabilities Served24

C.  Rights-Based Individual Advocacy Services25

D.  Investigations of Abuse and Neglect25

E.  Monitoring26

Facilities/Programs Monitored26

F.  Systemic Litigation28

G.  Educating Policymakers28

H.  Other Systemic Advocacy29

I.  Information, Technical Assistance and Referrals29

J.  Training29

K.  Public Relations and Outreach29

Part IV: Collaborations30

Part V:  Governance and Compliance31

A.  Board, staff and advisory council race and ethnicity31

B.  Consumer involvement in P&A governance32

Part VI: General Program Information33

A.  P&A Identification33

B.  Main Office33

C.  Satellite Offices (If Any) (Add rows if needed)33

D. CEO Contact Information33

E.  PPR Preparer Contact Information33

Part VII: Definitions34

****

# Part I:  Demographics

## Interventions on behalf of Individuals 

### *The following subsections include demographic information for the seven intervention strategy types listed in Part I.F.*

### A.  Individuals Served

*Count individual once per fiscal year (FY).  Multiple counts not permitted for lines A1 –A3.*

### 

###  B.  Problem Areas/Complaints of Individuals Served 

### C.  Gender of Individuals Served

### D.  Living Arrangements of Individuals Served

### E.  Reasons for Closing Individual Intervention Files

### F.  Intervention Strategies Used in Serving Individuals

## 

### G.  Age Range of Individuals Served

### H.  Primary Disability of Individuals Served

## Race and Ethnicity

### I.  Racial and Ethnic Diversity of Individuals Served

## Intervention Benefitting Groups 

### J.  Groups Served

*Multiple counts not permitted for lines J1 –J3 and J6.*

### K.  Problem Areas/Complaints of Groups Served 

*Indicate the number of group cases/projects addressing each of the problem areas/complaints below.*

### L.  Living Arrangements Targeted by Groups Interventions

*Indicate number of group advocacy cases/projects targeted at people in each of the living arrangements listed below. Cases/projects not targeting by living arrangement should be counted under “Not Applicable”.*

## 

### M.  Reasons for Closing Group Cases/Projects

### 

### N.  Intervention Strategies Used in Group Cases/Projects

### 

### O.  Age Ranges Targeted by Interventions for Groups

*Indicate number of cases/projects focused on people in each of the age ranges listed below. If a cases/project is not focused on age range, count it on the line 5 (not applicable).*

# 

### P.  Race/Ethnicity of Groups Served

*****Cases/projects where the number of people in the group served for any of the categories listed below is*

*disproportionately high in comparison to a state or territory’s census data.  More than one category per*

*project/case may be counted.*

# Part II:  Statement of Goals and Priorities

### A.  Report on FY 2014 Statement of Goals and Priorities (SGP)

**6.  Results Narratives of P&A Activities and Accomplishments Related to Above Goal**

*List goal and priority #(s) addressed in the activity described in the narrative below.*

**6.  Results Narratives**(cont.)**

*List goal and priority #(s) addressed in the activity described in the narrative below.*

**6.  Results Narratives**(cont.)**

*List goal and priority #(s) addressed in the activity described in the narrative below.*

**Other Qualitative Narrative Related to the Above Goal**

*Significant activity for which there were no quantifiable results goes here.*

**6.  Results Narratives**(cont.)**

*List goal and priority #(s) addressed in the activity described in the narrative below.*

**6.  Results Narratives**(cont.)**

*List goal and priority #(s) addressed in the activity described in the narrative below.*

**6.  Results Narratives**(cont.)**

*List goal and priority #(s) addressed in the activity described in the narrative below.*

**Other Qualitative Narrative Related to the Above Goal**

*Significant activity for which there were no quantifiable results goes here.*

**6.  Results Narratives**(cont.)**

*List goal and priority #(s) addressed in the activity described in the narrative below.*

**6.  Results Narratives**(cont.)**

*List goal and priority #(s) addressed in the activity described in the narrative below.*

**6.  Results Narratives**(cont.)**

*List goal and priority #(s) addressed in the activity described in the narrative below.*

**Other Qualitative Narrative Related to the Above Goal**

*Significant activity for which there were no quantifiable results goes here.*

### B.  Priority Setting Process[footnoteRef:1]  [1:  We propose that the P&A submit periodically a thorough description of the methods used for the priority setting process, and then annually indicate whether they have changed the methods used for the priority setting process. If it has changed, they would need to include a full description of the changes.] 

*Complete this section by providing a thorough description of how the P&A conducts priority setting process (e.g., methods) used to develop the goals and priorities for the fiscal years covered in your multiyear plan. Revise based on public input on an annual basis with the idea that major changes will be made when it is time for a new multiyear plan.*

**1.  Means by which the P&A conducted data-driven strategic planning, including formal public input***(Check all that apply below)*

**2.  Number of days for public comment:**

**3.  A copy of the proposed SGP for comment was provided to the:**

**State Council on Developmental Disabilities:**Yes/No

**The University Centers for Excellence in Developmental Disabilities Education, Research and Service:**Yes/No

4. **Describe efforts to assure diversity**(disability, geographic, racial, etc.)**in the data-driven strategic planning process**

**3.  Summary of Findings**

**4.  Summary of How Data was used to Develop P&A Goals and Priorities (include how priority input used, including input from the DDC and UCEDD)**

### 

**5.  List of topic areas of additional priorities that would be listed but are not due to lack of resources.**

### 

### 

### C.  FY _ _ _ _ Statement of Goals and Priorities (SGP)

☐ *There are no changes to the SGP from prior year.*☐ *There are changes to the SGP (see below below).*

### D.  Description of P&A Operations

# Part III: Results of P&A Activity[footnoteRef:2] [2:  Only those measures and subsections with data will be displayed when the report is submitted.] 

**Overarching Outcome Statement:**

*People with disabilities exercise their civil, human and legal rights.*

### A.  End Outcomes of P&A Activity

By End Outcome

By Intervention Type

### B.  Overview of How Many People with Disabilities Served 

## 

### C.  Rights-Based Individual Advocacy Services 

Outcome Statements

· People with disabilities exercised their rights because of access to rights-based and/or legal advocacy services.

· The P&A protected rights of individuals with disabilities through legal and rights-based advocacy in accordance with the retainer agreement or similar agreement between the client and the P&A.[footnoteRef:5] [5:  As developed in the P&A Standards, it is understood that all client representation is provided consistent with applicable rules of professional conduct including rules regarding ethics and requirements for continuing education.] 

· The P&A took action to protect the rights of people with disabilities to be free from abuse, neglect or discrimination.

### D.  Investigations of Abuse and Neglect

Outcome Statement

· The P&A takes action to protect the rights of people with disabilities to be free from abuse and neglect. 

**Other Qualitative Narrative**

### E.  Monitoring

Outcome Statements

1. People with disabilities live, work and go to school in safe and humane conditions.  

1. People with disabilities are provided with appropriate community-based services so that they can live as independently as possible.

## Facilities/Programs Monitored

Total Number of Unique Facilities: 

**Other Qualitative Narrative**

### 

### F.  Systemic Litigation

Outcome Statements  

· Rights of individuals with disabilities are advanced through class and/or systemic and/or systemic impact litigation.

· Through systemic or class litigation, obtain changes in policy, regulations and law that will benefit individuals with disabilities and/or prevent creation or implementation of policy, regulations or law that would harm individuals with disabilities.

· Settlements or judgments resulting from P&A systemic litigation positively impact the rights and interests of people with disabilities.

**

### G.  Educating Policymakers[footnoteRef:6] [6: ] 

Outcome Statement

· Statutes, ordinances and regulations will benefit individuals with disabilities.

### H.  Other Systemic Advocacy

Outcome Statement

The rights of individuals with disabilities are advanced through non-litigation group advocacy.

### I.  Information, Technical Assistance and Referrals

Outcome Statement

· People with disabilities, family members and others will receive basic disability related information and referral services.

### 

### J.  Training

Outcome Statements

1. People with disabilities have the skills necessary to conduct effective self-advocacy.  

1. People with disabilities have knowledge necessary to be an effective self-advocate.  

1. Family members and additional groups are provided information about laws and policies affecting individuals with disabilities as the P&A determines useful.

### K.  Public Relations and Outreach

Outcome Statements

· The public will become more aware of the existence and mission of the P&A.

· The public will become more aware of the content of disability rights laws and regulation and of disability rights issues.

**Other Qualitative Narrative**

# Part IV: Collaborations	 

*Use the boxes below to report on collaborative and coordination efforts with the following client assistance program (unless housed within the P&A), long term care ombudsman (unless housed within the P&A), developmental disabilities council, center(s) for excellence (university affiliated program) and any parent training centers. This is another place to describe collaboration with unserved/underserved communities/groups/populations and discuss collaboration with self-advocates. Optional:  Add boxes to report on other major collaborations.*

*Check one or more of the following boxes if the P&A houses any of these programs.*

*Add boxes as needed*

# Part V:  Governance and Compliance

### A.  Board, staff and advisory council race and ethnicity

### B.  Consumer involvement in P&A governance

# Part VI: General Program Information

### A.  P&A Identification

### B.  Main Office

### C.  Satellite Offices (If Any) (Add rows if needed)

### D. CEO Contact Information

### E.  PPR Preparer Contact Information

# Part VII: Definitions

**Absolute Unique Visitor***(pertaining to websites, blogs, etc.)*

The phrase “absolute unique visitor” is a term of art used in Google Analytics and similar applications. It represents the number of different people that visit a particular website or blog during a period of time specified by the user.   

**Abuse**

The term “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, and includes but is not limited to such acts as: 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, or any other practice which is likely to cause immediate physical or psychological harm or result in long term harm if such practices continue. In addition, the P&A may determine, in its discretion that a violation of an individual’s legal rights amounts to abuse, such as if an individual is subject to significant financial exploitation.

**Administrative Hearing**

An administrative hearing is a case level of intervention where an individual is represented by the P&A in requesting, preparing for, or participating in a formal proceeding to challenge a decision within an agency or facility, or between agencies, which does not involve adjudication by a court of law.  

**Administrative Remedy**

An administrative remedy is where the P&A represents the client in any non-judicial complaint resolution process provided by government agencies, boards, commissions, or other designated adjudicators, exercising decision making authority delegated by statute. Administrative remedy processes are generally simpler, less formal, and less technical than the judicial process.

**Advocacy Activities**

The term “advocacy activities” means active support of policies and practices that promote systems change efforts and other activities that further advance self-determination and inclusion in all aspects of community living (including housing, education, employment, and other aspects) for individuals with developmental disabilities, and their families.

**Alternative Dispute Resolution**

Alternative Dispute Resolution (ADR) describes any process for settling a contested matter outside of the formal judicial process.  ADR includes, but is not limited to negotiation, conciliation, mediation, and arbitration. ADR often includes the aid of a third, neutral party to guide the parties to a settlement. 

**Areas of Emphasis**

The term “areas of emphasis” means 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.

**Case**

A matter in which a significant service is provided that is intended to benefit one or more eligible individuals with developmental disabilities. A case file must be established and maintained by the P&A in each such matter. Each case must have a documented client goal. 

**Capacity Building Activities**

The term “capacity building activities” means activities (e.g. training and technical assistance) that expand and/or improve the ability of individuals with developmental disabilities, families, supports, services and/or systems to promote, support and enhance self-determination, independence, productivity and inclusion in community life.

**Client**

For the purposes of the PPR (but not necessarily for determining a client-attorney relationship), a client is an individual or group of individuals who meets three criteria: 1) he/she is eligible for the PADD  program; 2) a file/service record has been opened which includes at least the name, address, age, race, disability, signed release of information form (if appropriate), the concern or complaint and the goal of the action to be taken; and 3) he/she has been provided at least one significant service.    

**Client Objective**

The result(s) a client(s) desires and the P&A has agreed to pursue as documented in a retainer agreement between the client(s) and the P&A.

**Client Objective Met**

The result(s) a client(s) desired and the P&A agreed to pursue as documented in a retainer agreement was achieved, at least in part.

**Closed Case**

The status of a case when the issue has been addressed through the provision of some level of service, the service is no longer needed, or the client is no longer available to address the issue(s) and the closed status is documented in the P&A case management system.  

**Collaboration**

An activity or set of activities the P&A undertakes with a community partner(s) to pursue a shared advocacy goal. For purpose of this report it includes working with federally funded entities identified in the P&A mandates to assure coordination of the activities between the entities and to avoid inappropriate or wasteful duplication of services. These entities include a state’s or territory’s client assistance program, long term care ombudsman, developmental disabilities council, center(s) for excellence (university affiliated program) and mental health agency. Reporting on these collaborations is mandatory.

It also includes coalitions, task forces, councils, etc. in which a P&A participates for the purpose of advocating for systemic reform. These can be ongoing or time limited collaborations. Reporting on these collaborations is optional.

**Community Residential Setting**

A community residential setting optimizes autonomy, independence, and access to services and supports in the community in compliance with new Medicaid Home and Community Based Services regulations. 

**Complaint**

The term “complaint” includes, but is not limited to, any report or communication, whether formal or informal, written or oral, received by the P&A system, including media accounts, newspaper articles, electronic communications, telephone calls (including anonymous calls) from any source alleging abuse or neglect of an individual with a developmental disability.

**Culturally Competent**

The term “culturally competent,” used with respect to services, supports, and other assistance means that services, supports, or other assistance that are conducted or provided in a manner that is responsive to the beliefs, interpersonal styles, attitudes, language, and behaviors of individuals who are receiving the services, supports or other assistance, and in a manner that has the greatest likelihood of ensuring their maximum participation in the program involved.

**Direct Representation**

Legally advocacy provided pursuant to a retainer agreement between a client and a P&A.  The intervention types employed by the P&A in representing its client may include negotiation, administrative hearings and/or litigation.  

**Developmental Disability**

The term “developmental disability” means a severe, chronic disability of an individual that:

(1) Is attributable to a mental or physical impairment or combination of mental and physical impairments;

(2) Is manifested before the individual attains age 22;

(3) Is likely to continue indefinitely;

(4) Results in substantial functional limitations in three or more of the following areas of major life activity:

(i) Self-care;

(ii) Receptive and expressive language;

(iii) Learning;

(iv) Mobility;

(vi) Self-direction;

(vii) Capacity for independent living; and

(viii) Economic self-sufficiency.

(5) Reflects the individual’s need for a combination and sequence of special, interdisciplinary or generic services, individualized supports, or other forms of assistance that are of lifelong or extended duration and are individually planned and coordinated.

(6) An individual from birth to age nine, inclusive, who has a substantial developmental

delay or specific congenital or acquired condition, may be considered to have a developmental disability without meeting three or more of the criteria described in paragraphs (1) through (5) of this definition, if the individual, without services and supports, has a high probability of meeting those criteria later in life.

**Educating Policy Makers**

An essential strategy used to achieve systems change. Policy Makers may include individuals in both the executive and legislative branches of government who make or interpret policies (legislation, regulations, rules or practices) that impact the lives of people with disabilities. Our advocacy efforts might be directed at the local, state, or federal level. Educating these individuals makes them aware of how their actions may impact people with disabilities. Information reported should only include work done in accordance with the limit on federal funding.

**End Outcome**

An end outcome is a quantitative performance measurement that expresses the ultimate benefit to the client.

**Full Investigation*****(see also Investigation)*

The term “full investigation” means access to service providers, individuals with developmental disabilities and records authorized under these regulations, that are necessary for a P&A system to make a determination about whether alleged or suspected instances of abuse and neglect are taking place or have taken place. Full investigations may be conducted independently or in cooperation with other agencies authorized to conduct similar investigations.

**Goal Statement**

A goal statement is a general but measurable declaration that describes a future state and gives the general direction, purpose or intent of what should be achieved. A goal statement explains the end result or specific desired outcome. A goal should include a description of the result and the entity/group for whom the result applies. Goals should ultimately be achievable.

**Group Advocacy Services**

Group advocacy services include work on behalf of groups of people with disabilities pursued through the interventions of systemic litigation, legislative and regulatory advocacy and systemic advocacy (non-litigious and non-legislative).  It is concerted action to reform the policies or mode of operations of a system of services such as the disabilities service system or the policies and practices of private actors. 

**Group Number Impacted***(And the “At Least” Method of calculating an estimate)*

A specific unduplicated number of people impacted should be used with a “number impacted” performance measure when the number is known or a very close estimate is possible based on available data. For instance, you know all of the people on a particular ward of a hospital will benefit but the number of people on that ward varies slightly from day to day. Then a number close to the number usually present on that ward can be used.

If a close estimate is not possible based on available data but the range the number falls within can be determined and supported by available data, a number followed by a plus sign (+) from the following chart should be used in the “number impacted” performance measure.  This method of estimation should also be used when a certain number of people could be impacted but it is not clear that they all will be impacted.

If the number is unknown and there is no available data to support the estimation, then a “number impacted” performance measure should not be used.  

**Inclusion**

The term ''inclusion'', used with respect to individuals with developmental disabilities, means the acceptance and encouragement of the presence and participation of individuals with developmental disabilities, by individuals without disabilities, in social, educational, work, and community activities, that enable individuals with developmental disabilities to have friendships and relationships with individuals and families of their own choice; live in homes close to community resources, with regular contact with individuals without disabilities in their communities; enjoy full access to and active participation in the same community activities and types of employment as individuals without disabilities; and take full advantage of their integration into the same community resources as individuals without disabilities, living, learning, working, and enjoying life in regular contact with individuals without disabilities.

**Individual Advocacy Service**

Legal work on behalf of a client using one or more of the following intervention types: Self-advocacy assistance, limited advocacy, administrative remedies, negotiation, mediation/alternative dispute resolution, and/or litigation.   

**Individualized Supports**

The term “individualized supports” means supports that: enable an individual with a developmental disability to exercise self-determination, be independent, be productive, and be integrated and included in all facets of community life; designed to enable such individual to control such individual’s environment, permitting the most independent life possible; and prevent placement into a more restrictive living arrangement than is necessary and enable such individual to live, learn, work, and enjoy life in the community; and include early intervention services, respite care, personal assistance services, family support services, supported employment services support services for families headed by aging caregivers of individuals with developmental disabilities, and provision of rehabilitation technology and assistive technology, and assistive technology services.

**Information and Referral Service**

Information and referral includes responses to individuals at meetings, one-time telephone discussions, and follow-up mailings of letters, brochures and/or pamphlets per an individual’s request. I&R includes brief written or oral information, such as, generic information about the P&A, including information about additional programs and resources external to the P&A relating to the individual’s service needs and statutory or constitutional rights as a person with a disability. The agency generally would not have personal identifying information about the individuals who request and/or receive I&R services, except for possibly the name, address and telephone number. 

**Institutional Living Arrangement**

In keeping with the Medicaid Home and Community Based Services regulations, any facilities that does not optimize autonomy, independence, and access to services and supports in the community**.**

**Investigation**

An investigation is a methodological and thorough examination of information, records, evidence and circumstances surrounding an allegation of abuse and neglect. Investigations require a significant allocation of time and resources including such activities as interviewing witnesses, record review, gathering evidence and generating a written report, which may or may not be made public. An investigation is distinct from advocacy. A P&A may choose to pursue an individual advocacy service for direct representation (except when a death has occurred) arising from an investigation, i.e. consistent with the terms of a retainer agreement, and distinct from the investigation itself.  

**Law***(see also regulation and policy)*

For the purpose of completing this report, “law” refers to the body of federal or state common law, statutory law, regulations, and policy prescribing action or directing forbearance, usually attaching a legal consequence for failure to adhere.

Statutory law is created by enactments of legislative bodies declaring, commanding, or prohibiting something. Common law is developed from judicial decisions based on custom and precedent, unwritten in statute or code.

**Legal Guardian, Conservator, and Legal Representative**

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 on behalf of individuals with developmental disabilities. 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.

**Limited Advocacy**

Limited advocacy is a level of intervention that includes the provision of a discrete task to a client or a discrete contact on behalf of a client with a third party. Such activities upon completion require no further or ongoing actions, either formal or informal. Limited advocacy can include communications by letter, telephone or other means to a third party, preparation of a simple legal document, or assisting a client in the preparation of documents that are submitted by the client pro se to a third party.

**Litigation**

Litigation is any lawsuit or other resort to the courts to determine a legal question or matter. Litigation involves many complex legal issues which require not only a knowledge of the law that governs the dispute, but also, the laws governing the procedures to be followed in order to properly litigate a claim. There are rules governing who may file a claim, where it must be filed, when it must be filed, and how to file it.

**Mediation**

Mediation is an alternative dispute resolution process using the services of an independent third party to help settle differences or disputes between two or more individuals.

**Monitoring**

Monitoring includes activities in which a P&A evaluates compliance issues and quality of service by providers of services, supports and other assistance. Monitoring may******involve using the a P&A’s access authority to visit and in other ways seek information from institutional or community settings including public and private facilities where people with disabilities live, work and go to school by a) conducting face-to-face interviews with individuals with disabilities in those settings; b) conducting at least one face-to-face interview with a staff member in those settings; 3) observing and evaluating the physical conditions of the setting; and 4) accessing and reviewing records, when appropriate, in accordance with applicable federal and state law.  

**Neglect**

The term “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 developmental disability(ies) at risk of injury or death, and includes acts or omissions such as 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; or provide a safe environment which also includes failure to maintain adequate numbers of trained staff or failure to take appropriate steps to prevent self-abuse, harassment, or assault by a peer.

**Negotiation**

Negotiation is a problem-solving process in which two or more people voluntarily discuss their differences with a third party in an attempt to reach a joint decision on their common concerns. 

**Number Impacted Performance Measure**

A number impacted performance measure is one that asks for the number of people with disabilities in a group that was the target of a P&A’s advocacy.  

**Other Systemic Advocacy**

Other systemic advocacy refers to concerted action by the P&A agency to promote and effectuate changes in the policies, rules and laws that impact groups of people with disabilities, and to remove the barriers that prevent or impede them from leading full, productive lives in the community that does fit elsewhere in the form. Systems advocacy typically addresses the establishment, support, improvement, or expansion of (1) programs that provide services or benefits to persons with disabilities, and (2) the legal rights, protections, and entitlements of persons with disabilities; and may involve opposition to efforts to weaken, reduce or eliminate existing services or rights.  

**Outcome**

An outcome is a quantifiable performance measure expressed in terms of any result achieved for a client or group of clients.  

**Output**

An output is a performance measure that describes something quantifiable and concrete that is not descriptive of an end result desired by a client or group of clients but rather an incremental or interim step along the way. It can also be used to capture P&A engagement in an ongoing intervention.

**Outreach**

Outreach****is an activity that provides targeted information to specific populations regarding the activities of the P&A or one of its programs.

**Performance Measure Menu**

Each advocacy intervention type has an associated list of outcome and output performance measures. It is not expected that a P&A would use every performance measure on every menu.  

**Policy***(see regulation and law)*

For the purposes of completing this report, a policy is a basic principle and associated guideline, formulated in writing and enforced by the governing body of an entity, to direct and limit its actions.  

**Priority**

For purposes of this report, a priority is a subset of and related to a larger goal statement which the P&A plans to work on during the reporting period. Priorities are allocated resources so that a measurable result can be documented. Priorities as established through the SGP serve as the basis for the P&A to determine which cases are selected in a given fiscal year. P&As have the authority to turn down a request for assistance when it is outside the scope of the SGP, but they must inform individuals when this is the basis for turning them down.

**Probable Cause**

The term “probable cause” means a reasonable ground for belief that an individual with developmental disability(ies) has been, or may be, subject to abuse or neglect, or that the health or safety of the individual is in serious and immediate jeopardy. The individual making such determination may base the decision on reasonable inferences drawn from his or her experience or training regarding similar incidents, conditions or problems that are usually associated with abuse or neglect.

**Provision**

For the purpose of completing this report, a provision is a clause in statute, regulation or policy that explains a specific condition, effect, implication, qualification, or requirement that would result in benefit or detriment to people with disabilities.

**Qualitative Results**

The result of advocacy efforts expressed primarily through a narrative describing what was accomplished and includes the specifics of the outcomes and outputs reported in the quantitative results.

**Quantitative Results**

The result of advocacy efforts expressed using outcome or output performance measures.

**Regulation***(see policy, and law)*****

For the purpose of completing this report, a “regulation “ is a rule or order, usually promulgated by federal or state administrative agencies or governmental departments, designed to implement, interpret, or prescribe the procedures or practice requirements of an agency to carry out the intent of statutory enactments of the legislature.

**Results Narrative**

A qualitative results narrative describes the specifics of what the P&A achieved in response to a direct representation service request or in a group advocacy project in a way that illustrates and humanizes the associated quantitative performance measures. The narrative includes:

· Headline capturing the gist of what follows (optional but helpful to the AIDD reviewer)

· Priority addressed if applicable 

· The results narratives document (provide story of) how the advocacy elements worked together to achieve outcomes for our clients in a more efficient and coherent way than in the current program performance reports. The story/results narrative:

· Describe the problem presented, what the P&A did and what was accomplished 

· Give specifics to general terms in performance measures

· Description of how targeted toward unserved/underserved minority population, if applicable

· Next steps, if applicable

· Mention collaborators and partners, if applicable, including a cross reference to where a collaboration is described elsewhere in the report (Collaborations Section)

· Completed quantitative performance measures accomplished

**Self-Advocacy Assistance**

Self-advocacy assistance, formerly referred to as Short Term Assistance, is a level of intervention that can include advice and counseling, brief research, or letter writing to the client to summarize assistance given. Advice and counseling assistance includes informing a client of their rights; coaching the client in self advocacy; reviewing information; counseling a client on actions one may take; or assisting the client in preparing letters or documents and/or the dissemination of information and materials related to the disability rights issue raised by the client. It includes providing information sheets and other materials.  

**Self-determination Activities**

The term “self-determination activities” means activities that result in individuals with developmental disabilities, with appropriate assistance, having the ability and opportunity to communicate and make personal decisions; the ability and opportunity to communicate choices and exercise control over the type and intensity of services, supports, and other assistance the individuals receive; the authority to control resources to obtain needed services, supports, and other assistance; opportunities to participate in, and contribute to, their communities; and support, including financial support, to advocate for themselves and others to develop leadership skills through training in self-advocacy to participate in coalitions, to educate policymakers, and to play a role in the development of public policies that affect individuals with developmental disabilities.

**Significant Service**

Includes self-advocacy assistance, limited advocacy,****negotiation, administrative hearings/alternative dispute resolution, or litigation on behalf of P&A client.  

**Substantive Work**

Work performed by a P&A that can reasonably be interpreted as having contributed to a result measurable using one or more of the End Outcomes performance measures listed in Part III.A.

**Standardized Performance Measure**

A standardized performance measure is one that is to be used when doing like activity and reporting like results. For the purpose of this report it refers to both the outcome and output performance measures included in the result sections.  

**Systemic change activities**

The term “systemic change activities” means a sustainable, transferable and replicable change in some aspect of service or support availability, design or delivery that promotes positive or meaningful outcomes for individuals with developmental disabilities and their families.

**Systemic Litigation**

Systemic litigation is a concerted action to reform the policies or mode of operations of a system of services. It attempts to address a systemic issue raised by many individuals, through class action litigation, multi-plaintiff litigation, or in some cases individual litigation when the relief sought has the potential of affecting many people with disabilities.

**Technical Assistance**

Technical assistance is provided to family members, non-legal guardians, professionals or other advocates in consultation regarding an area of the law in which the P&A has expertise. It is considered a non-client directed activity.

****

**Tier 1 Review Tool**

The Tier I Review Tool is used by AIDD in the compliance and outcome review process of the SGP and PPR and will be used, in part, to determine whether a P&A needs a higher level of review (Tier II). It is used annually by AIDD staff to conduct high level program compliance and outcome reviews of the P&A PPR and SGP. The compliance review verifies through review of the PPRs and SGPs that the P&A is compliant with DD Act requirements. The outcome review uses narrative information and measures (data) to evaluate performance based on data analysis. The outcome review focuses on data and narrative results of outcomes/results achieved. The outcome and output data is reviewed for each P&A program and across all P&A programs to understand results.

**Training**

Training is an activity that builds skills and knowledge of target populations. Training may be provided to individuals with disabilities and others.

**Unserved and Underserved**

The term “unserved and underserved” includes populations such as individuals from racial and ethnic minority backgrounds, disadvantaged individuals, individuals with limited English proficiency, individuals from underserved geographic areas (rural or urban), and specific groups of individuals within the population of individuals with developmental disabilities, including individuals who require assistive technology in order to participate in community life.

1