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Supporting Families Community of Practice Evaluation

Pennsylvania State Data Brief

Evaluation Overview

In 2012, the Administration for Community Living (ACL), through the Administration on 

Disabilities (AoD)1, awarded the five-year National Supporting Families Community of Practice 

(CoP) grant to the National Association of State Directors of Developmental Disabilities Services 

(NASDDDS), which partnered with the University of Missouri-Kansas City Institute on Human 

Development (UMKC-IHD). In the first year of the grant, 15 states applied and five were selected 

to participate, including Connecticut, the District of Columbia, Oklahoma, Tennessee, and

Washington, with Missouri serving as the mentor state. Given growing interest in the work of the

CoP, NASDDDS and UMKC-IHD decided to expand and sustain the CoP outside of the initial 

grant. A second cohort, known as the expansion states, joined in 2016, including Alabama, 

Delaware, Hawaii, Indiana, Kansas, Maryland, Ohio, Oregon, Pennsylvania, and South Dakota. 

With interest continuing to grow around the nation, the CoP welcomed five new states—

Massachusetts, Michigan, Minnesota, Virginia, and New Jersey—in 2019 and created 

opportunities for participating states to adjust their level of participation.

Three project outcomes guide the work of the 

National Supporting Families CoP:

¡ State and national consensus on a national 

framework and agenda for improving supports

for families with children with I/DD

¡ Enhanced state policies, practices, and 

sustainable systems that result in improved 

supports to families

¡ Enhanced capacity of states to replicate and 

sustain exemplary practices to support 

families and systems

To examine progress toward federal project 

outcomes and identify which activities are leading 

to success, ACL funded the National Supporting 

Families CoP evaluation. The evaluation team 

gathered data that align with the three project 

outcomes to determine how the CoP is producing 

outcomes of interest to ACL, which reflect the 

five AoD priority areas (Exhibit 1). Findings will provide ACL with outcomes data and 

recommendations to improve supports to families of individuals with I/DD. They will also provide 

information on how the CoP and CtLC framework improve support and systems delivery of 

services to families and individuals with I/DD.

 

1 The Administration on Intellectual and Developmental Disabilities (AIDD) initiated the evaluation in 2017. The 

Administration on Disabilities (AoD) now oversees the evaluation.

Exhibit 1. AoD Priority Areas

The Five AoD Priority Areas

§ Ensure the continued protection of rights of 

individuals with I/DD and prevent their abuse, 

neglect, and exploitation

§ Improve and maintain effective and responsive 

management of responsibilities under 

Developmental Disabilities Assistance and Bill of 

Rights Act of 2000 (the DD Act)

§ Promote Employment First as a key strategy for 

individuals with I/DD to be contributing and 

productive members of society participating in 

the competitive integrated workforce

§ Empower individuals with I/DD and their families 

to access home and community based (HCBS) 

and supports that are self-directed and ensure 

opportunity for community participation

§ Support advocacy efforts of individuals with I/DD 

in order to ensure their participation in system 

and service delivery design
 2

The evaluation includes all 16 states that participated in the National Supporting Families CoP for 

at least two years between 2012 and 2018. For evaluation purposes, evaluators stratified states into 

three groups based on their stage of development, as described in Exhibit 2.

Exhibit 2. Evaluation Participants

Group One Group Two Group Three

The six original CoP states:

§ Connecticut

§ District of Columbia

§ Missouri (mentor state)

§ Oklahoma

§ Tennessee

§ Washington

States with previous exposure to 

the CoP and CtLC framework before 

joining the expansion state cohort:

§ Maryland

§ Ohio

§ Pennsylvania

§ South Dakota

States with little or no exposure to 

the CoP and CtLC framework before 

joining the expansion state cohort:

§ Alabama

§ Delaware

§ Hawaii

§ Indiana

§ Kansas

§ Oregon

Evaluators collected data from states using four tools:

¡ Reporting tools (one for each state grouping) gathered descriptive data about CoP structure, 

activities, and impact.

¡ Telephone interviews (informed by the reporting tools) collected contextual data about CoP 

activities and accomplishments specific to each state.

¡ Site visits (to select states) with CoP leadership and other stakeholders provided data on the

relationship between CoP activities, outputs, and outcomes.

¡ Materials review (on an ad-hoc basis) collected needed data on areas of interest.

Evaluators analyzed the collected data using a conceptual framework developed by Wenger, 

Trayner, and de Laat2(Exhibit 3), which assesses value creation in communities. Adapted for 

evaluation purposes, the framework considers five different cycles of value creation to capture the 

richness of value created by communities of practice. The following page describes the value 

generated from CoP activities and the CtLC framework within the Pennsylvania CoP.

 

2 Wenger, E., Trayner, B., and de Laat, M. (2011). Promoting and Assessing Value Creation in Communities and 

Networks: A Conceptual Framework. Rapport 18, Ruud de Moor Centrum, Open University of the Netherlands.

Exhibit 3. Value Cycle Framework
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A Look into Pennsylvania’s Community of Practice

Pennsylvania (PA) is one of the expansion states that joined the National Supporting Families CoP 

in 2016. The PA CoP is a collaboration among the Office of Developmental Programs (ODP), the 

PA Family Network, and Self-Advocates United as One (SAU1). The timeline below (Exhibit 4) 

provides detailed information about PA’s participation in the CoP over time.

Exhibit 4. Timeline of Pennsylvania’s CoP Participation

Using data from the most recent Residential Information Systems Project Report developed by the 

University of Minnesota, the number of people with I/DD known to or served by the PA 

Department of Human Services (DHS) in 2016 was 57,517 Long-Term Services and Supports

(LTSS) recipients include people with I/DD who receive Medicaid or State-funded supports and 

services. In 2016, 57% of 57,505 LTSS recipients in PA lived at home with a family member. The 

report also shows annual Medicaid Waiver expenditures for recipients with I/DD, which amounted 

to $74,022 per recipient in 2016.3

Understanding the current state of I/DD services and supports in PA is important in better 

understanding how CoP activities and the CtLC framework impact families and individuals with 

I/DD. The evaluation team gathered valuable data from PA through administration of the reporting 

tool, telephone interview, and materials review. After careful analysis of the data using the value 

cycle framework, the evaluation team noted the following key achievements by PA’s CoP during 

evaluation year one:

¡ The PA Employment First Act of 2018 expanded opportunities for individuals with Disabilities 

to gain access to employment.

¡ As a result of the CoP, PA realized an increase in both the access to and efficiency of services 

provided by ODP. Examples of this improvement include (1) an increase in the population with 

competitive integrated employment from 12% to 16%, and (2) an increase in services for 

individuals with autism.

¡ PA developed training programs to provide support to a variety of audiences including 

Administrative Entities (AEs), Supports Coordination Organizations (SCOs), providers, 

families, and self-advocates. In response to the training, the Office of Vocational Rehabilitation 

(OVR) has identified an interest in incorporating CtLC principles into its work.

 

3 Larson, S.A., Eschenbacher, H.J., Anderson, L.L., Taylor, B., Pettingell, S., Hewitt, A., Sowers, M., & Bourne, M.L. 

(in press, 2018). In-home and residential long-term supports and services for persons with intellectual or developmental 

disabilities: Status and trends through 2016. Minneapolis: University of Minnesota, Research and Training Center on 

Community Living, Institute on Community Integration.
 4

PA’s continued participation in the National Supporting Families CoP shows their commitment to 

the CtLC framework and advancing supports for families of individuals with I/DD. The following 

tables includes a more comprehensive list of PA’s achievements from evaluation year one.

Exhibit 5. Pennsylvania’s Achievements in Evaluation Year One, 2018-2019

Value Cycle CoP Activities and Achievements

Cycle 1: Immediate Value

Value of Activities and 

Interactions Themselves

§ The CoP structure in PA encourages stakeholders to engage at the local level 

on an ongoing basis through over 20 local collaboratives.

§ The PA CoP collaborates with several organizations to address pressing issues 

within the state, such as sexual abuse and employment. These groups include 

the PA Family Network, SAU1, and Vision for Equality.

§ In addition to collaboration between organizations, state agency leadership is 

becoming involved in the CoP. There is consensus across ODP, OVR, and the

Office of Childhood Development and Early Learning.

Cycle 2: Potential Value

Changes in Knowledge 

Capital

§ The PA CoP helps stakeholders identify new ways to simplify business practices 

to align with CtLC principles.

§ ODP works collaboratively with DHS to advance employment practices.

§ CtLC principles will be incorporated into the state’s case management system 

and new individual support plan (ISPs).

Cycle 3: Applied Value

Changes in Practice

§ ODP modified eligibility criteria for the three ID/A Waivers to include selfdirected care for individuals with autism.

§ Other waiver changes are the allowing of relatives to provide transportation, 

addition of nursing for children’s respite services, and a new Targeted Services 

Management (TSM) service that offers extended support to families on the 

waiting list.

§ PA developed a new training strategy to allow family members to offer 

Technical Assistance (TA) to and co-facilitate trainings for ODP staff.

Cycle 4: Realized Value

Performance 

Improvement

§ As a result of implementing community participation services, the PA CoP 

reported a shift in behavior towards increased levels of community 

participation and family leadership.

Cycle 5: Reframed Value

Redefining Success

§ As a result of the CoP, ODP is currently developing meaningful measures and 

outcomes.