Spring 2011, Issue 2

PAVING THE WAY
MEET COUNCIL MEMBER DARA DeROISTE
"TAKING THE TEMPERATURE" OF CULTURAL COMPETENCE IN PENNSYLVANIA'S DISABILITY SERVICES
SELF ADVOCATES UNITED AS 1 - MOVING SELF ADVOCACY FORWARD IN PENNSYLVANIA...AND BEYOND!

PAVING THE WAY

ASIAC is a nonprofit 501(c)(3) community based organization dedicated to assisting low-income and limited English proficient individuals to overcome cultural and linguistic barriers to health care and social services.  Since June of 1995, ASIAC has been at the forefront of providing language-appropriate and culturally sensitive services for people living with HIV who are Asians, Pacific Islanders, and members of other minority groups with limited English proficiency in Pennsylvania.

ASIAC’s current project with the PA Developmental Disabilities Council is titled the “Roadmaps Project”. This project was in response to the Council’s stated objective to “implement standards of cultural competence within all projects funded by the Pennsylvania Developmental Disabilities Council.” PADDC’s mission statement explicitly includes the priority to “pursue a cross disability agenda.” The Council recognized that individuals with developmental disabilities who are members of minority communities are often multiply disadvantaged. Race, ethnicity, religion, sexual orientation and economic class often influence what human services are made available, how much service is provided, and how long a service is provided to a family or individual.  In effort to address these barriers, ASIAC has been working for the past four years with grantees of the Pennsylvania Developmental Disabilities Council (PADDC) to achieve greater linguistic and cultural competence in the work PADDC does for the disability community in addressing these gaps in service for all groups.

Cultural and linguistic competence is “a set of congruent behaviors, attitudes, and policies that come together in a system, agency, or among professionals that enables effective work in cross cultural situations.”  ‘Culture’ refers to integrated patterns of human behavior that include the language, thoughts, communications, actions, customs, beliefs, values, and institutions of racial, ethnic, religious, or social groups. ‘Competence’ implies having the capacity to function effectively as an individual and an organization within the context of the cultural beliefs, behaviors, and needs presented by consumers and their communities.

The core of the project involves ASIAC working with PADDC grantees in building their own capacity to deliver language appropriate and culturally sensitive services in accordance with the US Department of Health and Human Services Office of Minority Health’s Culturally and Linguistically Appropriate Services in Health Care (CLAS) Standards.  CLAS, established in 2000, is a tool that ASIAC has utilized for the past decade of its linguistic and cultural competency work which includes building communities, changing organizational structures and removing barriers to access, and advocating for individuals seeking care. ASIAC has broadened the scope of CLAS beyond its health care focus by utilizing these standards in the context of disability access, advocacy, and policy organizations.

 As of 2011, the PADDC has funded projects for which ASIAC has completed 16 assessments, including one for PADDC.   Aside from the ongoing assessments of 6 new grantees for the Roadmap Project, ASIAC is concurrently working on a historical review of the project and as a result is preparing a self-administered toolkit for future grantee organizations interested in becoming more culturally competent through the use of internal self-assessments, as well as resources for learning more about linguistic and cultural competency.  The toolkit is titled Paving the Way: A Toolkit for Assessing and Advancing Cultural Competency and will be available for new, incoming grantees.

ASIAC has provided capacity building to 10 grantees and 1 other disability related organization. At least 4 grantees  that ASIAC has followed up with have advanced their cultural competency by taking on the recommended steps in their Roadmaps while many other grantees have opened their eyes to thinking more critically about integrating  cultural diversity and practices. ASIAC has provided follow-up support for grantees as well.  ASIAC plans to finish assessing the remaining grantees for cultural competence and provide continued follow-up support. ASIAC also intends to begin to pilot the new toolkit for grantees in the upcoming year.

Finally, two organizations that ASIAC would like to highlight for their noteworthy efforts in developing their own cultural and linguistic competence are the PEAL Center and the Elizabeth M. Boggs Center on Developmental Disabilities at UMDNJ-Robert Wood Johnson Medical School.

ASIAC  was very impressed with how the Boggs Center has institutionalized culturally competent practices within their organization. The Center emphasizes a community based, life span approach to meeting the needs of individuals with developmental disabilities and their families through the many services offered. One valuable resource that was shared by the Boggs Center was the NJ Statewide Network on Cultural Competence list serv. This network was established in collaboration with the Dept Health and Senior Services, Dept of Health and Human Services and participating agencies including the Boggs Center. It serves as a resource for organizations to post information, news and/ or request assistance on a culturally or linguistically competent related issue. ASIAC was able to utilize the listserv for the review of a Spanish translated message. ASIAC received a tremendous amount of feedback and assistance from various agencies across the disability community. We highly recommend this listserv to all the grantees of the PADDC.  Please visithttp://www.state.nj.us/njsncc/index.shtml  to sign up. Also, to learn more about the Boggs Center and their services visit http://rwjms.umdnj.edu/boggscenter/.

ASIAC recently provided capacity support for PADDC grantee, the Parent Education & Advocacy Leadership (PEAL) Center. The PEAL Center is an organization of parents of children with disabilities reaching out to assist other parents of children with disabilities and special health care needs, and professionals. This particular organization reached out to ASIAC and requested support in connecting with a phone interpretation provider and assistance in the translation and review of a Multilanguage Rack Card. The rack card is being used in the promotion of PEAL’s services in targeting diverse and Limited English Proficient families with children with disabilities. We commend PEAL for taking the initiative to carry out these steps by first ensuring they have the full capacity to serve all clients and then following through with the appropriate targeted outreach. To learn more about this organization, please visit http://www.pealcenter.org/aboutus/history.html

MEET COUNCIL MEMBER DARA DeROISTE

Harrisburg resident, Dara DeRoiste began his tenure at the Pennsylvania Developmental Disabilities Council in 2008 after a chance meeting with then Council Member Kevin Burrell at a community fair.  Burrell invited Mr. DeRoiste to attend a Council meeting as his guest. DeRoiste became interested in the Council’s process and continued to attend meetings.  Soon thereafter Deroiste was nominated to serve on Council. Currently Mr. DeRoiste serves on the Advocacy Committee, as well as the Multi-Cultural Workgroup.

Dara DeRoiste is the Director of Human Resources at the Pennsylvania Department of Administration, Department of Banking. When he’s not working, Dara, along with his 11 year old son Cameron, can often be found at the local movie theater especially if it’s a 3-D feature. He is a member of his homeowners association and is involved in the community garden in his neighborhood. Dara also enjoys music and reading and spending time with family and friends.

While Dara has learned a great deal about the workings of Council, he feels like he is still learning about the complete workings of the Council. DeRoiste has especially appreciated the opportunity he has had to meet and network on a personal level with other members of the Council, meeting other parents and professionals. He also values the chance to widen his knowledge base regarding resources and services that may be available for his son Cameron.

"TAKING THE TEMPERATURE" OF CULTURAL COMPETENCE IN PENNSYLVANIA'S DISABILITY SERVICES

As Pennsylvania, the United States, and other advanced economies grow increasingly diverse – a process fueled by both globalization and international migration -- and as barriers to opportunity persist for native-born individuals from culturally diverse backgrounds, cultural competence in the delivery of disability services and supports becomes essential for organizations of all types.

In an effort to “take the temperature” of cultural competence in the disability system, the Council has embarked on a major project to analyze the responsiveness of Pennsylvania disability organizations to diverse individuals and communities.

In the fall of 2009, the Council contracted with Diversity Dynamics, a New Jersey-based consulting firm specializing in research, training, and technical assistance related to the challenge of serving culturally diverse populations, to undertake a study of cultural competence in the disability service system in the Commonwealth and to produce a report and set of recommendations for consideration by policy makers and stakeholders.

The approach of Diversity Dynamics, which accords with the priorities of PADDC, is to examine cultural competence from a systems point of view, looking at the nature and effectiveness of culturally competent interventions at many different levels: community, practitioner, organization, and system as a whole. The project also seeks to understand the evidence base for cultural competence, i.e. the extent to which specific approaches reduce inequities in service delivery and lead to improved client outcomes. It appears as if this is the first time that any state has attempted a study of this type.

The Diversity Dynamics team consists of Dr. Nicholas V. Montalto, President of Diversity Dynamics and lead investigator, and Dr. Rooshey Hasnain, Visiting Research Assistant Professor and Project Director at the Center for Capacity Building on Minorities with Disabilities Research at the University of Illinois at Chicago,

In pursuing their work, the consultants employed a variety of research methods, including surveys, in-person and telephone interviews, focus groups, and a literature review. More than 250 organizations submitted responses to the two surveys circulated by the Diversity Dynamics team.

Part of their work involved the identification and description of “model” cultural competence practices, both in Pennsylvania and elsewhere in the country and world. More than 50 such practices will be featured in the final project report, including such initiatives as the Korean Outreach Project at Moss Rehabilitation in Elkins Park (PA); the public education work of Asians and Pacific Islanders with Disabilities of California; the Illinois Family Resource Program of the Illinois Department of Human Services; the Multicultural Health Brokers Co-Op in Edmonton, Alberta (Canada); and the Diversity and Cultural Competency in Disability Advocacy Initiative of TASH in Washington, D.C.

The project devoted special attention to the newer cultural and linguistic groups that have settled in Pennsylvania over the last 25 years. The following communities were selected for study: Asian Indian, Chinese, Jamaican, Korean, Liberian, Mexican, Nigerian, and Vietnamese.  Structured interviews were conducted with leaders of many of the grassroots organizations serving these communities. Although the project singled out these communities for special attention, the conclusions and recommendations of the study, however, will have relevance to all underserved communities in the state.

The final project report will be available for distribution, both in hard copy and electronic form by the end of June 2011. A draft of the final project report is currently being reviewed by a panel of nine out-of-state experts in cultural competence and disability. Anyone wishing to receive a copy of the report should send an email to Dr. Montalto atnvmontalto@comcast.net. Please specify whether you want a hard or electronic copy of the report.

In order to draw attention to the report and its recommendations and to showcase some of the model practices featured in the report, a coalition of groups will hold a conference in the fall on the subject of cultural competence and disability. Sponsoring organization include the Governor’s Cabinet and Advisory Committee for People with Disabilities, the PA Association of Rehabilitation Facilities, and the PA Immigration and Citizenship Coalition. Information regarding the date, location, and content of the conference will be made available shortly. Anyone wishing to receive information about the conference should also email Dr. Montalto at nvmontalto@comcast.net.

SELF ADVOCATES UNITED AS 1 - MOVING SELF ADVOCACY FORWARD IN PENNSYLVANIA...AND BEYOND!

Self-Advocates United as 1 (SAU1) is a group of people with disabilities with a mission to “Support the self-advocacy of people with disabilities and their families for positive impact in their communities and in people’s lives.” SAU1 envisions “a world where people with developmental disabilities and their families are united to share knowledge, empower others, and use their voices to transform their lives and communities.”  SAU1 believes the assurances in the Developmental Disabilities Act, “that people with developmental disabilities…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”, are more than just words, and works to teach people and challenge systems that prevent these rights from being realities for so many.

The Board of Directors and members of SAU1 have been working diligently to engage people with disabilities in self advocacy and partner with other groups.  They believe that when people can work together they are a powerful group. SAU1 has connected people across the state in monthly teleconferences, funded by a grant from the Disability Advocacy Supports Hub. People have called in from many settings – their homes, day programs, state centers, and group homes. Professionals from Centers for Independent Living, PA Developmental Disabilities Council, Client Assistance Program, and more have called in to share information about programs and services callers may be interested in.  At the March teleconference, self advocates across the state had many of their questions and comments about their services answered by three providers.  After the teleconference, one of the providers commented that although we think we have come a long way (towards supporting people in everyday lives), the questions and comments showed there is a long way to go.

SAU1 is building relationships with many other groups in the disability community within PA and beyond. The Pennsylvania Association of Providers (PAR) helped SAU1 obtain volunteers for their teleconferences.  Terry Roth of the Policy Information Exchange was a guest speaker for the April teleconference, helping callers understand some of the impact of the proposed PA budget and how they can advocate for support of services.  SAU1 is working with a new alliance of self advocates and family members in PA to preserve systems that work and advocate for initiatives such as ending the PA waiting list for people with intellectual disabilities and autism.  SAU1 President, Oscar Drummond and Vice President, Carolyn Morgan are part of the PA team for a national summit – Envisioning the Future – Allies in Self Advocacy to be held in Columbus in late April.  Currently, members in the western part of the Commonwealth are taking part in Temple University’s Institute on Disabilities C2P2 Emerging and Established Leaders program in Pittsburgh; eastern members took part in the same program when offered in Philadelphia.

Organizationally, SAU1 has applied for its incorporation, and its next step will be to apply for 501 (c) (3) status. SAU1 now has a page on Face Book (type SAU1 in the search box) and continues to work on its website (http://www.sau1.org/). Board members stay connected through weekly statewide teleconferences. SAU1 is represented at the Planning and Advisory Committee of the Office of Developmental Programs (PAC) with one organizational seat, and three other Board members serve as appointees of the Deputy Secretary.
SAU1 has touched the lives of thousands of people through its teleconferences, outreach, and participation in other groups.  The Board members volunteer thousands of hours each quarter to follow their mission, supporting self advocacy of people with disabilities for positive impact in our communities and in people’s lives.

Would you like to join, advocate, or help SAU1?  Find out more by calling Kaye Lenkner, Project Coordinator, at 215-717-8006 or e-mailing klenkner@sau1.org. Like us on Facebook too!