Monday, November 12, 2018

Recreation, Sports and the Arts: What Has Changed Since 2001 to 2018?


Recreation, Sports and the Arts: What Has Changed Since 2001?

Julie Ann Racino
Cornell and Syracuse University 

November 12, 2018

         In 1979, we began the first community integration programs (See, wikipedia) with community agencies (e.g., United Way network, Neighborhood centers, Folksmarch) making possible the participation of parents and their children who earlier were in institutions or at best, confined to a bed (or mat) in a home.  By then, the Arc-US and UCPA (1940s and 1950s) already had a lengthy history of advocacy, and began programs of education for their children and were already deeply involved with US courts at all levels.

         By the 1980s, the university sector (e.g., community rehabilitation, special education, child and family studies) began to document these efforts, ranging from camp integration to a range of leisure and recreation activities (e.g., community choir, social clubs). These integration activities influenced the elite and extremely life changing Special Olympics begun by Eunice Shriver to form a unified sports branch. Later developments included the International Best Buddies of Anthony Kennedy Shriver, active worldwide today. Examples of federally supported (education research and training) included:
 
Walker, P. (1994). Promoting inclusive recreation and leisure opportunities for adults.  In: M.S. Moon (Ed.), Making School and Recreation Fun for Everyone:Places and Ways to Integrate. (pp. 163-178). Baltimore, MD: Paul H. Brookes. 

Walker, P. (nd). Developing individualized supports: The experience of two chapters of the arc in rural New York State. Community Integration Report: National Arc Newsletter. Arlington, TX: The Arc-US.

Walker, P. & Edinger, B. (1988, May). The kid from Cabin 17. Camping Magazine, 18-21.

Walker, P. & Shoultz, B. (nd). Supporting children and youth with disabilities in integrated recreation and leisure activities. Community Integration Report. Arlington, TX: The Arc-US.

To explain, Betsy Edinger was hire through an award to Julie Ann Racino at TLS (Transitional Living Services) and Pam Walker was hired as a student-employee through our Rehabilitation Research and Training Center on Community Integration at Syracuse University. Bonnie Shoultz was hired through the second refunding of the RRTC on Community Integration and managed a contract with Arc-US.

        Today, many programs, especially with "generic community sites"  and community participation are termed inclusion (e.g., inclusion and the Girl Scouts).  However, the NGOs of yesteryear which struggled with their service versus advocacy "roles and departments", are now major managed health care providers in the US still filed as 501.c.3 (charities). The future of inclusion, in the age post-diversity, no longer is a debate of segregation versus integration, but often a question of what the NGOs and governments will do, support and fund. 

       Leisure and recreation theories and practice were often termed therapeutic recreation with children's play therapy, and recreation professionals and volunteers (e.g., city park programs, ballsports) were and often are separately educated. These professions were involved for decades in approaches to human ecology, in deinstitutionalization (e.g., Pedlar, 1990), in sociology and leisure, in family and community health (Neff et al, 2000), and in the gender and ethnic analyses of "sports and recreation" (e.g., Sparhawk et al, 1989). Examples from that period were:

Carter, M. (1998). Increased professionalism: An experience from the United States. Journal of Leisurability, 25(2): 20--25.

Compton, D.M. (1997). Issues in Therapeutic Recreation. Champaign, IL: Sagamore Publishing Co.

Godbey, G. (1997). Recreation and parks in a changing world: Becoming a health service. Parks and Recreation, 32(3): 91-106.  

Hemingway, J. (1996). Leisure: The recovery of freedom in leisure. Journal of Leisure Research, 28: 27-43.

Henderson, K.A. (1994). Perspectives on analyzing gender, women, and leisure. Journal of Leisure Research, 28: 27-43. 

Neff, L.J., Ainsworth, B., Wheeler, F., Krumwiede, S., & Trepal, A. (2000). Assessment of trail use in a community park. Family and Community Health, 23(3): 76-84. 

Pawlcwski, A., Holmes, F., & Hafner, R.J. (1993, July). Wilderness therapy for psychiatric disorders. Mental Health in Australia, 5(1): 8-14.

Pedlar, A. (1990). Deinstitutionalization and the role of the therapeutic recreation in social integration. Journal of Applied Recreation Research, 15(2): 101-112. 

Racino, J. A. (2000). Personnel Preparation in Disability and Community Life. Springfield, IL: Charles C. Thomas Publishers. 

Schleien, S., Rynders, J., & Green, F. (1994). Facilitating integration in recreation environments. In: M. Hayden & B. Abery (Eds.), Challenges for a Service System in Transition. (pp. 121-145). Baltimore, MD: Paul H. Brookes.

Sparhawk, R., Leslie, M., Turbow, P., & Rose, Z. (1989). American Women in Sport: 1887-1987: A 100 year Chronology. London: The Scarecrow Press. 

       In the health care fields, recreation was often funded through a "blanket" residential habilitation or even "prevocational" habilitation category (habilitation was in MLTSS-managed Long Term Services and Supports in 2013) under the home and community-based Medicaid Waivers. In addition, recreation itself may be pursued through "friendships or relationships" (Perske, Lutfiyya, Amado) which often results in the need to strengthen "tracks to Special Olympics" (See, also Paralympics, and integrated road racing, charity runs). Separate recreation teams have also been established through specialized service agencies (See, Square Market/Utica Monday Nite), and programs from traditional clubhouses (e.g., Besacom & Zipple, 1995), adult day services, and aging may also be the base for community integration or inclusion. For example:

Besacom, V. & Zipple, A.M. (1995). From day program to clubhouse: Practical strategies for supporting the transformation. Psychosocial Rehabilitation Journal, 18(3): 7-15. 

Gold, D. (nd). Challenges to Integrated Leisure and to Friendships with Labelled People. Toronto, CA: Community Participation Consulting. 

Janicki, M. & Keefe, R. (1992). Casebook: Integration Experiences. Albany, NY: New York State Office of Mental Retardation and Developmental Disabilities. 

Lutfiyya, Z.M. (1991). "A feeling of being connected" Friendships between people with  and without disabilities. Disability, Handicap, and Society, 6: 233-245. 

Perske, R. (nd, 1988). Circle of Friends: People with Disabilities and Their Friends Enrich One Another. Nashville, TN: Author. 

Pomes, L., Faus, L.L., Fredericks, B., Reiman, J., Neal, J., & White, J. (1998). Supporting deaf-blind students to develop social relationships. In: L.H. Meyer et al (Eds.), Making Friends: The Influence of Culture and Development. (pp. 299-316). Baltimore, MD: Paul H. Brookes. 

Strully, J. & Strully, C. (1992). The struggle toward inclusion and the fulfillment of friendship. In: J. Nisbet (Ed.), Natural Supports in School, at Work, and in the Community for People with Severe Disabilities. (pp. 165-177). Baltimore, MD: Paul H. Brookes. 

     Other strands of "research and education" in rehabilitation had and have roots in nutrition or physical activity and fitness, especially with First Lady Michelle Obama's fight against obesity in America. However, often these approaches "shift to other dedicated professionals" which includes the professions of physical therapy (major offices and health care billings), chiropracty (post-X rays, new educational requirements), nutritionists (often employed in intermediate care facilities and hospitals-the classic 1,200 calorie diet), and occupational therapy to public health. The original intent might be closer to the macarena/folk dance, daily aerobics to dance, choosing new veggie in the grocery store, or having a modified physical therapy routine (e.g., pushup and situps).

      New practices were the "use of mood music" for relaxation, meditation and yoga, change in nutrition in publicly available foods (e.g., calories, fat content), group board games in the evening (e.g., cognitive, social), diversity of fresh produce, modernized home delivered meals, and new standards for physical activity (e.g., nautilus, pedometers) incorporated into health plans.  New practices were often developed through the eras of wellness and health promotion (e.g., bicycling versus autos); however, often with attention to specific "disabilities" (e.g., diabetes and scuba). In the prior period, beginning in the 1970s, the struggle between a cook in a group home (then apartments), and personnel cooking with house members, involved issues of nutrition, among others. Examples of this period (pre-public health gloves in restaurants):

American Public Health Association. (1990). Healthy Communities 2000: Model Standards. (3rd edition). Washington, DC: Author. 

Applegate, L. (2001, July). Nutrition: Liquid energy. Runner's World, 36(7): 24, 26. 

Feury, M. (2000, September). Walk of the weight. Woman's Day, 74: 54-61.  

Gaynor, M.L. (1999). Sounds of Healing: A Physician Reveals the Therapeutic Power of Sound, Voice and Music. NY, NY: Broadway Books.  

Kabat-Zinn, J., Lipworth, L., & Burney, R. (1985). The clinical use of mindfulness meditation for the self-regulation of chronic pain. Journal of Behavioral Medicine, 8(2): 163-190.

Prosterman, S.A. ( July/August). Safe scuba diving with diabetes. Diabetes Self-Management, 104-108. 

Siegel, P., Brackbill, R., & Heath, B. (1995, May). The epidemiology of walking for exercise: Implications for promoting activity among sedentary groups. American Journal of Public Health, 85(5): 706-710.

Spiller, C.S. (2001, July). The best veggies for you and how to cook them. Natural Health Magazine, 66-69, 105-107. 

Tomberlin, J.A. (1990). Physical therapy in community re-entry: Assessment and achievement of physical fitness. In: J. S. Kreutzer & P. Wehman (Eds.), Community Integration Following Traumatic Brain Injury. (pp. 29-46). Baltimore, ND; Paul H. Brookes. 

      Inclusion, community integration  ("community and disability") and "sports for all" continues to be a challenge as "racial segregation" (highly paid at televised sports) is even seen as valued (e.g., football, soccer, baseball, basketball), and side-by-side sports, especially by gender (with sports hierarchies) are a common base for competitive endeavours. The Motorsports research reports describe "traditionally male sports" (i.e., auto racing, automobile driving, dirt bikes and motorcycles) and what in disability was termed a disability hero (as the centerpiece woman of NASCAR)!!

      The independent living approaches of the World Institute on Disability represented the comprehensive approach to housing, education, employment, voting/public life, health, "child care and shopping" (businesses), and recreation/arts and culture (See, UN Convention on the Rights of Persons with Disabilities, 2006, 2018; PInterest, Community and Policy Studies, 2012). The 1993 bibliography by Susan Brown still best exemplars this comprehensive "community and disability" approach (integration and independent living).

     The Paralympics (world events) still are often referred to as an elite class which, however, operates separately from the "main or regular Olympics". Thus, as anticipated a "disability culture" or way of understanding the world developed over time (e.g., Brown, 2003) and is centerpieced at the university education schools today. These cultures may mirror the "larger society" (similar competitive approaches in Paralympics) or may be in diverse or antithetical positions (e.g., "ugly is beautiful") to that society. However, disability culture speakers, as often civil rights activists, do expect to be able to travel to their lecture sites, among others.

Biklen, D. (1987, March). The culture of policy: Disability images and their analogues in public policy. Policy Studies Journal, 15(3): 515-565. 

Braunstein, M. (1993/1998). In search of disability culture. In: B. Corbett & J. Dobbs (Eds.), New Mobility Magazine's Spinal Network. Malibu, CA: Marimar Communications.

Brown, S. (1993). An Independent Living Approach to Disability Policy Studies. Oakland, CA: World Institute on Disability. 

Brown, S.E. (2003). Movie Stars and Sensuous Scars: Essays on the Journey from Disability Shame to Disability Pride. NY, NY: People with Disabilities Press. 

Forliti, A. (2000, December). Rules of the road: Women drivers nurtured in racing school. ABC News.com. 

Jensen, T. (2000, August). Winning is everything. NASCAR Illustrated, XIX(8): 92-96.

Katz, E. (1994). The national institute of art and disabilities: An art center for adults with developmental disabilities. Mental Retardation, 32(2): 137-140.  Now, Intellectual and Developmental Disabilities, and Inclusion.

Mirzceff, N. (1997). Blindness and art. In: L. J. David (Ed.), The Disability Studies Reader. (pp. 382-398). NY, NY: Routledge. 

Moylan, N.F. (2001, May). Wheelchair whimseys: Here I am world. Mohawk Valley Women: A Publication For, by and About Women. (p.16).  Rome, NY: Mohawk Valley Media.

Racino, J. (2003). Motorsports Research Series, Reports 1-5.  Rome, NY: Community and Policy Studies. Square Market/Community and Policy Studies.

Rome Art and Community Center. (1997, September 30-October 4). Exceptional Artworks: Events Brochure. Rome, NY: Author. 

Screen Actors' Guild Committee for Performers with Disabilities (2001, May 3). Everything Production Needs to Know When Performers with Disabilities Are Hired. CA: Author. Link to UCPA (United Cerebral Palsy Association) National-Net. 

Thompson, R.G. (1997). Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature. NY, NY: Columbia University Press. 

...(1994). Fodor's great American vacations for travelers with disabilities. Fodor's Travel Publications

Young, D. (1998). The delicate art of flying in a power wheelchair. In: B. Corbett, J. Dobbs, et al. (Eds.), Spinal Network. Malibu, CA: Marimar Communications.

A Bibliography on Recreation, Sports and the Arts was prepared in 2001, and National Parks and Recreation Association has discussed inclusion and inclusion policies. Special Olympics has celebrated its 50th Anniversary, and over four decades of publications since the 1980s are available online and in archives. Medicaid and Medicare as health care reform are current in 2018, and Education has increased its funding in states in the US.

      Current governmental emphasis has been on safety and security within the context of all walks of life, and the Health and Human Services Administration is in proposed reorganization by the current federal administration. Independent living continues to be supported as a framework, and has changed its nature and organization in 2018. Multiple state departmental policies could be involved (e.g, OASAS, Office of Alcohol and Substance Abuse Services, NY), and the newest factors are the corrections fields and its implications.

Julie Ann Racino, Health and Human Services Administration
American Society for Public Administration (ASPA) 2018

       

       

Thursday, October 11, 2018

Chapter 14: Community Living: Lessons for Today

Community Living: Lessons for Today

1991

By Steven J. Taylor and Julie Ann Racino
Syracuse University, Syracuse, New York

     Back in 1991, we began: 
       "Over the past 5 years, we have studied community living programs for people with the most severe disabilities- the organizations, the practitioners, the lives of the people with disabilities, the services and supports, and the government and community context. We also have had an opportunity to observe the participation of people with disabilities in the community- their relationships, their associations and activities, and the way in which informal networks and formal systems interact."

      "The most important lesson we have learned is that we continue to learn. As we traveled the country looking at innovative programs and services and working with states and agencies, we found ourselves constantly refining our thinking about community living, revising our assumptions about how communities and states work, and recalling lessons we have previously learned. Let us tell you about some of the lessons as we know them today". 

We continued briefly: On Deinstitutionalization, On Limitations of Services and Service Systems, On Relationships, On Community, On Supports, Not Facilities, On Families and Their Children, On Homes and Support, On Living A Meaningful Life,  On Professionals and Change, On Changing Service Systems, On Government, and On Diversity (pp. 235-238). 

     Now, the final section was on Concepts: "Concepts, ideas and principles that help us get from on place to another. Yet, they must be viewed in historical context. The ideas that guide us today, can mislead us tomorrow. Concepts that should be able to move us beyond where we are today are:
* Community Integration
* Informal Supports
* Friendships
* Self-Determination
* Nonaversives
* Own Homes
* Personal Assistance Services
* Circle of Friends
* Bridgebuilding
* Supported Jobs
* Building Community
* Choices
* Community Participation
* Permanency Planning
* Housing and Supports
* Individualized and Flexible Supports
* Life Sharing

     "Concepts such as normalization, integration, and mainstreaming make sense only in a society where people with disabilities cannot move freely in and out of relationships and participate fully in community. Having those concepts does not mean that we have arrived; it only means that we recognize that people with developmental disabilities have been denied."

     "As times change, there arises a need to find new concepts and ideas suited to those times. We must be prepared to abandon old concepts and find new ones to guide us through the challenges and dilemmas we will undoubtedly face." (p.238).

Taylor, S.J. & Racino, J.A. (1991). Community living: Lessons for today. In: L.H. Meyer, C.A. Peck, L. Brown (Eds.), Critical Issues in the Lives of People with Disabilities (pp. 235-239). Baltimore, MD (Sydney, Australia, London, Great Britain, Toronto, Canada): Paul H. Brookes. 

     Community Living Concepts Today:
A Brief Note

Julie Ann Racino

2018

     In 2018, I attribute a circle of friends to the work of Judith Snow in Canada and the inclusion groups. In fact, the friend might be an owner of a cafe, or a professional service provider. Parents for Positive Futures were instrumental in taking hold of professional supported employment and making it real jobs (e.g., family businesses and future roles).  We thank the community groups in education and community development for their work on bridgebuilding (John Kretzmann, John McKnight, Zana Lutfiyya, Steven Taylor, Robert Bogdan). Believe it or not, the federal government itself followed community integration proposals by community participation proposals for NIDRR centers. L'Arche and lifesharing (e.g., Camphill) continues to be an ideal for religious communities. 

     Supports continue to be popular, including in facilities (e.g., hospitals), as family approaches, and as person-centered planning. Academic contributions on supports were often basic (e.g., instrumental, financial, cultural) but significant (e.g., negative support). In addition, women particularly analyzed the invisible contributions that "made things happen" and resulted in better lives and situations. As was not expected, "individualized and flexible" was often the former, with the latter often flexible for the workers, agencies or management. "Own home" led the way to options other than facility-based planning (e.g., intermediate care facilities, group homes), and housing and support (e.g., supportive living, supported housing, housing and health care) were essential for home and community-based services waivers (demonstrations). Supports became part of the research on social networks.

     Choices and self-determination became hallmarks of "user-directed services", a term associated with personal assistance services. Of course, the latter independent living and "parental voluntary" associations became large service delivery providers, always with the advocacy and community at the front of these organizations. Friendships from "the Strullys" (Jeff and Cindy) curbed the tide of "aversives and punishment" that was pervading the professional domains, and made even the concepts of inclusion possible. Community was thought about from the university sector, and "never really captured" the social networks and relevance of those involved (e.g., even low income of own families). However, community is throughout the literature as the reframing of the "institutional mindset" with professionals on both sides of the river (e.g., David Schwartz, Crossing the River).  

    Permanency planning begins federal law for planning for children, and enters into required professional roles for social workers, and laws on child protection. The hope for family support to replace the framework of "abuse and neglect" became service options and often "removed the families from the judicial neglect and abuse system" through separate systems of workers and community systems. This era marked the UN Rights of the Child which later became supplemented by the rights of parents in societies (current at UN, 2018 at ethnic and cultural minorities); thank you to the National Council on Disability for its successful "completion of this academic track". 

       Community living is prominent today, even more so than in the 1980s, being a federal term at the departmental and legislative levels. And for those of us who know the governments, "be careful what you wish for" still is the case in 2018, especially at the public health-criminal justice-MLTSS interfaces with the essential "education and rehabilitation" foundations of Long Term Services and Supports (LTSS). Independent living and supportive living remain popular terms with family caregiving gaining in ascendancy at the "aging of the baby boomers". 

Racino, J.A. (2014). Public Administration and Disability: Community Services Administration in the US. London, Boca Raton, FL, and NY, NY: CRC Press, Francis and Taylor.

JAR2018




Tuesday, October 9, 2018

University Schools of Education and the Fields of Disability in the US: A Brief Look Back at Its History

UNIVERSITY SCHOOLS OF EDUCATION AND 
THE FIELDS OF DISABILITY IN THE US: 
A Brief Look Back at Its History

Julie Ann Racino, 2018
Syracuse University, School of Education
Rehabilitation Researcher, US Department of Education
1985-1991


        The field of disability in the 1970s and 1980s was often identified with specific educational programs, often called vocational rehabilitation (VR) and special education ("special ed"). Emerging new were residential services (e.g., community living, Wolf Wolfensberger in special education; Hank (Henry J.) Bersani and Julie Ann Racino through NIDRR) which complemented the VR's independent living program. All the support programs, which often have an "independent living flavor**", are part of the community living branch. 

        At the federal level, US Education hosted a subdepartment (lead) called the Office of Special Education and Rehabilitation Services (OSERS) which were prominent disability leaders through decades (e.g., Honorable Judith E. Heumann). The National Institute on Disability Research and Rehabilitation (NIDRR) was also located in US Education, now up for federal realignment in 2018, and was as the name implies "rehabilitation research" (with community living as above). 

     At the university levels, a subdepartment in education was also called Division of Special Education and Rehabilitation (at Syracuse University, that period, Douglas Biklen), and the faculty often "hired" to teach or instruct in one of the two fields. This division was and is located in the Schools of Education, though new colleges have sprung up related to these subfields (Racino, 2017). In particular, the roles of psychological, social and behavioral, and mental health fields have been impacted. 

    All peer-reviewed journals, faculty promotions, and community planning often divided into these two specializations separated in part by "age ranges" (school children and adults). Now education schools are involved in teacher preparation programs (teacher credentials, school administration credentialing, state and federal requirements), with federal funds, and adult education, which could even be arts, sciences and culture (though not usually; "Cultural Foundations of Education").

     In 2018, the disability programs are "cordoned off" at Disability Studies in Education (DSE) which has attracted a new group of researchers who explore psychologies (and for this author, without explaining psychology-experimental, theoretical, clinical, community, existential, advanced practicuums- or having even a course). The concern was to begin with "school shooters" and new procedures in education on "active shooter drills". 

Bersani, Henry J. (2012). With Disability and Public Health (Drum, Krahn, & Bersani, 2009). 

Biklen, Douglas. (2012). Wikipedia. See, facilitated communication.

Biklen, Sari. (2017, passed). Cultural Foundations in Education, Syracuse University. Syracuse, NY: Alumni Visit. 

Heumann, Judith E. (2012). Wikipedia. See, also, World Institute on Disability. 

Racino, Julie Ann. (2017). Health and Human Services Section Membership Colleges. Denver, CO: American Society for Public Administration. 

Wolfensberger, W. (2012). Wikipedia.  See, normalization and social role valorization.

Brief Word on the Organization of Special Education

    The organization of special education predates the 1970s "baby boomer" arrivals at the workplaces. When this author arrived in 1983 via NIDRR funds, inclusion and inclusive schools was still at a conceptual stage (e.g., Stainbacks in Iowa, Biklen in Syracuse, New York) and prior work was known as school integration (e.g., Steven J.Taylor) and mainstreaming (e.g., Carol Berrigan). This author might have said that mainstreaming was necessary to "get to the same school building" and "school integration" is necessary for there to be any inclusion or inclusive activities at all.  Now the federal laws date back to 1974 (i.e., Education for All Handicapped Children's Act)!

     Having already been chairing mental health planning in the county (where Syracuse University is located), this author was concerned immediately about the "old category" of emotionally and behaviorally disordered (EMBDs) for children which was still being used by the governments and their public-private school systems. And regretfully, the nation has indicated that it is still there today pushing through an "adult psychiatry" framework based upon that "old diagnostic and institutional" approaches. And, in part that is due to the "psychiatrist" often being the MD in charge of involuntary commitments and even the operation of institutional wards.

Critical Issues and Critical Studies

    Now the book I have on my desk today was the "guidance given to the future teachers" in special education and rehabilitation for "severe disabilities" (an unpopular term at independent living groups). Now the library referencing and indexing terms were handicapped, handicapped-deinstitutionalization-US, and handicapped-services for-US, and handicapped-legal status, laws, etc.-US. The EMBD ("emotionally and behaviorally disordered") groups are now attempting to reclassify the entire books and departments as their works (e.g., service typologies), such as this author's 40 site federal study (which they renamed and "lied about"). And that is called "current academics" (no academic is allowed to destroy books) subsequent to Scott Peck's People of the Lie. In fact, the group is following this author and doing so today in part as "property acquisition" (2018). 

     The book today is the 1991 effort by the International Association of Persons with Disabilities (TASH International) which supported quality life in the community for families and their children, and were involved in matters from calls against the use of restraints to the first educational and recreational programs for children with severe behavioral or medical challenges in the US. Their main journal called JASH is now retitled as Research and Practice in Severe Disabilities (2018). The Paul H. Brookes Publishing Company, which carried a line of "special education and rehabilitation" books, distributed the textbook, Critical Lives of People with Severe Disabilities (Meyer, Peck, & Brown, 1991) via Baltimore, MD, London, Toronto, and Sydney. The book offers 39 chapters (plus empowerment and choices by "behaviorist" Herb Lovett, and conclusion by Syracuse University faculty, Luanna Meyer Voeltz) largely by educational authors from around the Nation. 

     As a brief commentary, while stories and capacity approaches are highly valued (O'Brien & Mount), the entire book is the province of special and rehabilitation educators. In particular, that means the "dual diagnoses" (mental retardation and mentally ill, as part of whom TASH serves), cultural sensitivity, friends of the court (to US Supreme Court), immigration (at "remedial education" at language acquisition and cultural adaptation), and the following major sections:

**Definitions and Diagnoses as the new functional assessments, and "testing and diagnoses".
**Deinstitutionalization and Community Services as public policy, capital investments, federal budget resolutions, and integrated vs segregated and institutional settings in addition to community living, supported employment, recreation and leisure, social relationships and new community living.
** Redefinition of Continuum of Services led by Steven J.Taylor as "instead" Zero Exclusion Policies ("subgroup of the providers to the university sector", by the way). This section includes resolutions on the continuum, supported education, personnel preparation, supporting families, regular education environments, integrated related services, and integration revolution (second wave).
** Extensions of the Public Law and Educational Services. Resolutions on Extended School Year, Rehabilitation Act, Section 504 and Educational for Handicapped Children's Act. Early intervention, early childhood, preschool integration, early intervention, and family assessment and empowerment frame this section. 
**Adult Services Reform and Omnibus Legislation. This section included the first community living reform for adults with disabilities, choice, control and communications, review of federal statutes and programs for modifications, and personal futures and community participation. 
** Life and Death Issues with resolutions on infant care, nutrition and hydration, organ transplant, and cessation of "intrusive interventions" and resolution on "SBIS". The section discusses the future of applied behavioral analysis, power and aversive control, medical treatment and responsibility, to "behavioral empowerment and choices". 
Meyer's conclusion (chapter 41) is on the Discrepancies between What is, and What Ought to Be and How to Get There (popular conference conclusion, too). 

Thank you to Jervis Public Library for making the book available for a $3.00 interlibrary shipping fee charge in 2018. 

Meyer, L.H., Peck, C.A. & Brown, L. (1991). Critical Lives for Persons with Severe Disabilities. Baltimore, MD: Paul H. Brookes. 

Now, a few conclusions at "academics" and "lies". The reader can first see why referring to the above plan with teachers and professionals across the country really cannot be called dumping. It may, however, refer to the relationships of one group of professionals to another. Second, the adult services reform could be considered relatively funded and "should be completed" (e.g., NIDILRR, US Department of Health and Human Services; Associations for Community Living). The two major disability laws have "passed the test of time" and all the "programs or terms" are known today. Third, the medical and the behavioral are deeply intertwined since many medical conditions can cause "behavioral symptoms" as can "poor care" or "poor social environments".  Adding "behavioral health" to everything does not clarify anything ("obscufate"); and claiming one profession offers it instead of another or another department does not "solve the problem". Finally, life and death has moved to other areas such as abortions (genetics) and physician assisted suicides, and that of elders and the poor (as "disparate medical care") still is not really public.

Racino, Julie Ann. (2000). Personnel Preparation in Disability and Community Life. Springfield, IL: Charles C.Thomas Publishing. 

  ** For example, this author only offered voluntary community services (Let's start, check with the Arc and UCPA and your United Way agencies under new management.) directly, though authorized for "involuntary commitments" to institutional facilities (e.g., private, state or other government operated entities). Involuntary, legal procedure was termed 2-physician certificate (and, yes, did involve voluntary commitments at history of suicidal attempts). And, I might explain that physicians do and should think differently is not agreed upon in part due to still "bad physician preparation" (e.g., What is quality of life? What are the choices available? What is the difference between community and institutional living? What are the different "community treatment modalities" today)?  Now confirmed since 1991 are police attacks on the voluntary care management (different management?) and collusion of that nature with the local judicial and its government. Readers were referred to Steven J.Taylor's book on amazon.com.

Racino, J.A. (2014). Public Administration and Disability: Community Services Administration in the US.  NY, NY: CRC Press.

Taylor, S.J. (2009). Acts of Conscience: World War II, Mental Institutions, and Religious Objectors. Syracuse, NY: Syracuse University Press.

Tuesday, September 18, 2018

Community Services and Financing Bibliography: Bridging the 20th to the 21st Century Gap

COMMUNITY SERVICES AND FINANCING:
BRIDGING THE 20TH TO THE 21ST CENTURY GAP

September 18, 2018

Julie Ann Racino, ASPA Budget and Finance 2018

         In the new book, Public Administration and Disability: Community Services Administration in Disability: Community Services Administration (Racino, 2014), Chapter 9 discusses Individual Budgeting and Financing (e.g., US Presidential).  In addition, in 2015 in Chicago, Illinois, ASPA Co-Chair Julie Ann Racino presented on the rise in health care financing in "community services" in the US (Racino, 2015). During the 2016 US Presidential Campaign (known as Hillary vs. Trump) (NY Times Hillary Clinton wins Minnesota's 10 electoral votes, with 100% reporting), the skyrocketing US debt was presented visually to the Town Hall Audience of Governor John Kasich of Ohio in Utica, New York. 

        Minnesota's Governor (Democratic State) announced an influx of funds into behavioral health care systems after Democratic Andrew Cuomo (2016) led on supported and affordable housing earlier in his second term as Governor of New York State. Following a high profile position on social-behavioral services by President Barack Obama (See, wikipedia, 2018), the bulk of the university research reported in peer-reviewed  journals continues to support quality community living and services in the US (Racino, 2000a, b; 2014).  These "community programs" have traditionally (very new in the 1980s!) been funded categorically (e.g., through federal and state laws) and include:

                 ** Family Support-Family Preservation-Permanency Planning
                 ** Early Intervention (now to Family Planning)
                 ** Foster Families, Adoption, and Family Services
                 ** Residential Services (e.g., Group Homes) to Housing, Homes/Support
                 ** Transition and Independent Living for Young Adults
                 ** Aging Parents and Family Caregiving
                 ** Supported and Community Employment and Sheltered Employment
                 ** Early Childhood Education and Child Care Programs
                 ** Recreation and Disability at "Good Life and Good Day"
                 ** Case Management and Services Coordination
                 ** Transportation and Disability 
                                      (See, Community and Policy Studies, PInterest)

In addition, community services were traditionally organized around "the disability" (e.g., mental health, substance abuse and alcohol, visual and hearing, learning disability, brain injuries), also operated by state departments and their "local" NGO and private provider systems (e.g., criminal justice) (Racino, 2000a, 2000b). In 2018, new "opiod epidemics" follow these departmental and financial organizational tracks with leads at the Executive levels of government (e.g., NY, Kathy Hochul, and Washington, Kelly Anne Conway). 

       Early on individualized financing and person-centered planning (e.g., Racino, 1991 at Syracuse University, federally funded; O'Brien, 1987 in schools) were proposed to "organize services around the person" and to assure that all federal funds are "in compliance with federal laws" regarding individual education plans,  individual vocational plans, and new individual family support plans, among others ("alphabet soup" of the IEPs) (Racino & Knoll, 3 US states, 1986). Now, the answer is easy: What happened to Bobbie**? Where is Paulette#? Is Perry+ still involved? The new community services had followed exposes "of the US and state governments" (Blatt & Kaplan, 1974) and external systems (e.g., judicial) often "monitored or controlled"^^ the new service systems though "not operating these services". 

       Now, health care reform (e.g., 1993, President Clinton's Health Security Plan; 2016 Hillary Clinton and Bernie Sanders, US Presidential Debates) represents the bulk of governmental funding, and the government is "involved with" managed care systems (e.g., "contractual management" at a large oversight and operations level) (e.g., Smith, Gettings, Racino; PCMR, 1995). That means the actual budget and financial operations of health care in the US (e.g., OMB, 2016), the US Presidential calls for health care reform (2018, Bernie Sanders on single payer systems modeled on Medicare; rally at the Republican Nick Pirro Convention Center, 2016 for the US Presidential campaign) , and the "Obama era" state health care exchanges (2010 Patient Protection and Affordable Care Act). However, the "disability services" often historically were "carved out"and demonstrated as federal reform through "Home and Community-Based (HCB) Medicaid Waivers"(Racino, 2014); Bob Gettings (1994) and Gary Smith (1994) described the public financing relationships to community services. 

       In the "health financial" arena (e.g., mental health insurance coverage; ethics of cost containment; future of primary care in intellectual disabilities; options for the uninsured; adolescents in managed care; private practitioners; cost sharing under managed care) (e.g., Brown, Lakin & Burwell, 1997; Racino, 2000), other "disability developments" included the federal creation and recognition of community living (e.g., Administration on Community Living), in addition to the prominence of independent living (e.g., new NIDILRR, National Institute on Disability, Independent Living and Rehabilitation Research). The latter was discussed by Bergman and Racino at ASPA's Annual Conference in Seattle, Washington in 2016 (Bergman & Racino, 2016) as part of the cultural diversity initiatives and panels. 

      In addition, in the new book, Public Administration and Disability (Racino, 2014), the need to strengthen Long Term Services and Supports (LTSS) in the community continues to be a challenge (NCD, 2004, 2005). While successful in targeted initiatives in the community (e.g., supported and community housing, family caregiving, new clinics, supportive living and family support, early childhood) (e.g., Agosta & Melda, 1988; Arc-US, 1994; Carling, 1993; Herman, 1994; Racino, 2014;  Sheehan & Oakes, 2002; Singer & Irvin, 1991; Singer, et al, 2012; Taylor et al, 1989; Westlake & Kaiser, 1991), traditional Long Term Care (LTC) facilities and "high rise buildings for the elderly and poor" continue to be yesterday's challenges still remaining today. The latter may already have "modernized" or "increased the available services" with public financing (Racino, 2014, 2018) together with expansion in roles at state and NGO levels, and of "environmental and social justice" as political campaigns.

References

Arc-US. (1994, October). Report Card to the Nation on Inclusion of People with Mental Retardation in Community Housing. Arlington, TX: Author. 

Agosta, J. & Melda, K. (1998). Supporting families who provide care at home for children with disabilities. Exceptional Children, 62(3): 271-282. 

Bergman, A. & Racino, J.  (2016, March). Employment and Disability in the 21st Century. Panel Moderator: Sanjay Pandey.  Seattle, WA: American Society for Public Administration, Public Administration and Disability. 

Blatt, B. & Kaplan, F. (1974). Christmas in Purgatory: A Photographic Essay on Mental Retardation. Syracuse, NY: Human Policy Press. 

Brown, S., Lakin, K.C., & Burwell, B. (1997, winter). Beneficiary-centered care on services for persons with developmental disabilities. Health Care Financing Review, 19(2): 23-46. 

Carling, P.J. (1993, May). Housing and supports for persons with mental illness: Emerging approaches to research and practice. Hospital and Community Psychiatry, 44(5): 439-449. 

Clinton, H., Sanders, B., O'Malley, M. (2016). First question: Health care reform. US Democratic Debate Moderated by Lester Holt, Andrea Mitchell and Chuck Todd. NBC News, January 17, 2016. 

Cuomo, A.M. (2016). Governor Announces Awards for Development of First 1,200 Supportive Housing Units*#. Albany, NY: NYS Governor's Office.

Gettings, R. (1994). The link between public financing and systemic change. In: V. Bradley, Creating Individual Supports for People with Developmental Disabilities. (pp. 155-170). Baltimore, MD: Paul H. Brookes.

Herman, S.E. (1994, December). Cash subsidy program: Family satisfaction and need. Mental Retardation, 32(6): 416-421.  [Steven J. Taylor, New York State, Editor, deceased; Consulting Editors include Sheryl Larson Minnesota, Pat Rogan Indiana, and James A. Knoll then of Michigan]

Kasich, J. (2016).  Town Hall Meeting. US 2016 Presidential Campaign. Mohawk Valley Community College, Utica, New York. 

......  (2016). Minnesota Election Results. US Presidential 2016 Election. New York Times Online, live 8:51:59 on 11/10/2016.

National Council on Disability. (2004). Consumer-Directed Health Care: How Well Does It Work? Washington, DC: Author. 

National Council on Disability. (2005). State of 21st Century Long Term Services and Support Financing and Systems. Washington, DC: Author. 

O'Brien, J. (1987). A guide to lifestyle planning. In: G.T. Bellamy & B. Wilcox (Eds.), A Comprehensive Guide to the Activities Catalog: An Alternative Curriculum. (pp.175-190). Baltimore, MD: Paul H. Brookes. 

Office of Management and Budget.  (2016). Obama Administration Budgets and Policies. Washington, DC: OMB (online). 

President's Committee on Mental Retardation. (1995). Medicaid reform, managed long-term care, and SSI reform. Collaborating for Inclusion: 1995 Report to the President. Washington, DC: PCMR, US Department of Health and Human Services, Administration on Children and Families. 

Racino, J., Knoll, J. & Taylor, S. (1986). Public policy, budget and finance, severe disabilities.  The Community Integration Project. Community Report Series. Syracuse, NY: Syracuse University, Center on Human Policy, Division of Rehabilitation and Special Education Services. 

Racino, J. (1991). Organizations in community living: Supporting people with disabilities. Journal of Mental Health Administration, 18(1): 51-59.

Racino, J. (2000a). Community Services and Financing Bibliography. (pp. 1-140). Rome, NY: Community and Policy Studies.  

Racino, J. (2000b). Community Support: Community Services and Systems Change. Personnel Preparation in Disability and Community Life. (pp. 119-144). Springfield, IL: Charles C.Thomas Publishers.   

Racino, J. A. (2014, May 4). Community Financing in the 21st Century: The Rise of Health Care Financing in the Community. Panel Moderator: William Rivenbank. Chicago, Illinois: American Society for Public Administration. 

Racino, J.A. (2014). Family support, family studies and community services. In: J. A. Racino, Public Administration and Disability: Community Services Administration in the US. (pp.101-122). NY, NY and London: CRC Press, Francis and Taylor.

Racino, J. A. (2014, manuscript 2012). Long term services and supports in the community. In: J. A. Racino, Public Administration and Disability: Community Services Administration in the US. (pp. 65-100).  NY, NY and London: CRC Press, Francis and Taylor. 

Racino, J. (2018). Deinstitutionalization in the 21st Century: The State of the Science in Public Administration and Disability. Burlington, VT: NeCopa: Northeast Conference on Public Administration). 

Sanders, B. (2016). Rally at the Nick Pirro Convention Center. US 2016 Presidential Campaign. Syracuse, New York. 

Sheehan, N.W. & Oakes, C. (2002). Public policy initiatives addressing supportive housing: The experience of Connecticut. In: J. Pynoos, P. Feldman, & J. Ahrens, Linking Housing and Services for Older Adults. (pp. 81-115). London: The Haworth Press. 

Singer, G.H. S. & Irvin, L.K. (1991). Supporting families of persons with severe disabilities: Emerging findings, practices and questions. In: L.H. Meyer, C.A. Peck, & L. Brown (Eds.), Critical Issues in the Lives of People with Severe Disabilities. (pp. 271-312). Baltimore, MD: Paul H. Brooke. 

Singer, G.H.S., Biegel, D.E., & Ethridge, B. (2012). Trends impacting public policy for caregiving families. In: G. H. Singer, D.E. Biegel, & P. Conners, Family Support and Family Caregiving Across Disabilities. (pp. 186-202). London: Routledge. 

Smith, G. (1994). Paying for supports: Dollars, payments and new paradigm. In: V. Bradley, J. Ashbaugh, & B. Blaney (Eds.), Creating Individual Supports for People with Developmental Disabilities. (pp. 481-490). Baltimore, MD: Paul H. Brookes. 

Taylor, S.J., Knoll, J., Lehr, S., & Walker, P. (1989). Families for all children: Value-based services for children with disabilities and their families. In: L. Irvin & G. Singer, Support for Caregiving Families: Enabling Positive Adaptations. (pp. 41-53). Baltimore, MD: Paul H. Brookes. 

Westlake, C.R. & Kaiser, A.P. (1991). Early childhood services for children with severe disabilities: Research, values, policy and practice. In: L.H. Meyers, C.A. Peck, & L.Brown (Eds), Critical Issues in the Lives of Persons with Severe Disabilities. (pp. 429-458). Baltimore, MD: Paul H. Brookes.

White House Domestic Policy Council. (1993). The President's Health Security Plan: The Clinton Blueprint. NY, NY: Times Books, Random House. 

Wikipedia, Family support, community integration, and supportive living, 2012
    
Key
** facilitated communication, See Biklen's wikipedia 
#   personal assistance services (PAS) to health care systems 
           (World Institute on Disability)
+   self advocacy international, national history available
^^ TASH International, call to stop use of restraints, 1980, 2015
*# See, 2017-2021 Financial Plan for the NYS Executive Budget (2/17/2017)

Notation. Julie Ann Racino, a Syracuse University Maxwell Alumni, is a Member of the American Society for Public Administration in 2018. Its premier journal on budgeting is Public Budgeting and Finance which does not specialize in Health Care Financing Review (separate peer-reviewed journal). The ASPA society also publishes a range of journals, inclusive of Journal of Health and Human Services Administration.  The American Public Health Association, which Racino has served on in previous years, publishes the American Journal of Public Health. Specialty journals (e.g., Intellectual and Developmental Disabilities, previously Mental Retardation) are published by dedicated national societies and are available today online. 

      

Monday, August 13, 2018

Historical, Heritage, Nature and Environmental Tourism

Historical-Heritage and Nature-Environmental Tourism: 
The 20th and 21st Century in America

Julie Ann Racino

August 2018

Excerpted from: Racino (2003). Utica Monday Nite: Arts, Culture, Nature and History at the City Level. Rome, NY: Community and Policy Studies.

Historical and Heritage Tourism

       The major theme of the History Park in 2002 for Utica Monday Nite (current events today, 2018) was the 225th Anniversary of the American Revolution. Other History Park events  included the national historical sites of Oriskany Battlefield, General Herkimer's Home and Fort Stanwix (the Fort Schuyler) located in the region. Alan D. Foote, President of the Mohawk Valley History Project, together with David Morgan, Commander at Fort Stanwix, were among those participating in the series of events at the History Park (See, Foote and Storn, 2001). 

     Major commemorative events for the Anniversary were candeleria ceremonies on the Oriskany Battlefield hillside with descendants of the battle (photos on Square Market/ Community and Policy Studies), and historical tourism events (e.g., re-enactments and encampments) at Fort Stanwix. The latter described the siege of Fort Stanwix which stood its ground during the revolution (also, Summer 2018, and 100 years of the National Parks, United States of America). Similar to tourism sites today, the site hosts a museum, gift store, and archeological artifacts from the period. 

      In addition, the Oneida Historical Society (now the History Center) continued a coordinated series of programs during Summer 2002 with Utica Monday Nite, including such evenings as Ukranian Independence Day in Europe and the German Mannaechor celebrations.  Host and Trustee Joe Kelly recently held an event at the History Center to bring local history to the public for presentation and discussion, and Frank Tomaino spoke in 2017 at historic Bagg's Square in Utica, NY.  James Pula edited the Encyclopedia of Polish American History for the reference collections (see, Utica Public Library). Rome Historical Society hosted a 200 years of the Erie Canal event celebrating the canal that changed New York's history. 

Anderson, K.C.B. (2002). Strength and harmony in the Mohawk Valley's Welsh and Polish communities. In: J.S. Pula (Ed.), Faces in the crowd: Ethnic portraits. (pp. 35-53). Utica, NY: Center for Historical Research, Utica College.  

Campbell, W.W. & Stone, W.L. (1977). Seige of Fort Stanwix (Schuyler) and Battle of Oriskany. Rome, NY: Bropard, Inc.

Foote, A. (1999). Historical guide to the Battle of Oriskany. Whitesboro, NY: Kwik Copy Printing Center and the Mohawk Valley History Center.

Greenman, J. (1978). Diary of a common soldier in the American Revolution, 1775-1783.  DeKalb, IL: Northern Illinois University Press. 

Herkimer, G. (1996). Road to Oriskany. Corpus Christi, TX: Alfa Publishers. 

Lutyk, C.B. (1996, January/February). America's national monuments. National Geographic Explorer, XIII(1), pp. 88-99.  (Fort Stanwix, p.99).

Raphael, R. (2001). Native Americans. A people's history of the American revolution: How common people shape the fight for independence. (pp. 187-244). NY, NY: The New Press. 

Symonds, C.L. (1986). Map #14: Forts Stanwix and Oriskany: A battlefield atlas of American history. (p.43). USA: The Nautical and Aviation Publishing Co. 

Tehanetoreous. (1999). Wampum belts of the Iroquois. Summertown, TN: Book Publishing Co. 

....(nd). Historic Utica: A guide to the city's outdoor sculpture. Utica, NY: Landmark Society of Greater Utica. 

Thayer, K.C. & Foote, A.D. (2002). The young liberators: Volume one: From civilian to soldier. Utica, NY and Holland Patent, NY: Oneida County Historical Society and Steffen Publishing Co. 

Tomaino, F. (1998, October). Utica, NY. In: D.F. White (Ed.), Exploring 200 years of Oneida County history. (pp. 97-115). Utica, NY: Oneida County Historical Society. 

Venables, R.W. (1995). Introduction. The six nationals of New York: Mohawks, Oneidas, Onondagas, Cayugas, Senecas and Tuscaros. (pp. vii-xxvii). Ithaca, NY and London, GB: Cornell University Press.  

In 2014, Mohawk Valley Living continued to explore "Arts, culture and heritage of our valley", including the Shawangunk Nature Preserve in Coldbrook (founded in 1975), and Notes from East Utica (e.g., Annual pilgrimage and feast of Sts. Cosmas and Damian).  In 2017, the Declaration of Independence continues "to be read" at Fort Stanwix in a ceremony on the 4th of July annually held in Rome, New York. The Ukranian situation in Europe was dire upon a "Russian takeover", and the UN and Congressional web tv stations are available. 

Nature Tourism and the Environment

      Nature tourism, also known as environmental and ecotourism (e.g., Moran, 1999), has been introduced to Utica Monday Nite through tours of the Utica Marsh (including an introduction through the windows of the Adirondack Scenic Railroad) and in 2002, with a series presented by the local chapter of Kids Against Pollution (KAP) based at the Children's Museum. Nature tourism, while reflecting state, regional, city, county and national parklands, is locally most associated with the Erie Canal (promoted throughout New York State) and with the region's location as a doorway to the Adirondacks, one of the forestlands of beauty, (conservation), and recreation in the state. 

        Currently (2018), bicycling is popular, and bicycling atlas and maps are available in local areas in New York (e.g., Oneida and Herkimer counties). In addition, continued development along the Erie Canal, included new construction of the trailpaths linking throughout the state, and in the local area, a new award winning Chittenango Landing (land of Oz celebration annually). In addition to the Adirondacks, the Catskill Mountains are popular in New York with cross country skiing, snow shoe trails, snow tubing, downhill skiing, snowmobiling trails (see, conflicts on use and the environment), snowboarding for "our Nordic friends". 

      The new ecotourism was agri-tourism with recommended maple syrup and honey among the products with eateries, B&Bs (bed and breakfast), and restaurants central to any tourism industry. Yet to be discussed with these industries are all the meat and poultry products which are regulated similar to the FDA (food and drug administration) in Washington, DC. 

Brown, L.R., Flavin, C. & French, H. (2000). State of the world 2000: A worldwatch institute report on progress toward a sustainable society. NY, NY: W.W. Norton & Co., Inc. 

Chazen Companies. (2001, September). Rome Sand Plains Register. Glens Falls, NY: Author. 

Clinton, B. & Gore, A. (1992). Environment. Putting people first: How we can change America. (pp. 93-99). NY, NY: Times Blake. 

Digeronimo, T. (1995). A student's guide to volunteering. Franklin Lakes, NJ: Career Press. 

French, H. (2000). Vanishing borders: Protecting the planet in the age of globalization. NY, NY: Worldwatch Institute. 

Hollender, J. (1990). Part I: Protecting the environment. How to make the world a better place. (pp. 27-110). NY, NY: William Morrows Co., Inc.

Long, V.H. (1993). Nature tourism: Environmental stress and environmental saturation. In: A. J. Veal, P. Johnson, & G. Cushman (Eds.), Leisure and tourism. Sydney, Australia and Ontario Canada: Center for Leisure and Tourism Studies, and the World Leisure and Recreation  Association. 

Moran, E. (Ed.) (1999). The global ecology, 71(4). NY, NY: H.W. Wilson Co. 

Morgan, S. (1997). Homes and cities. NY, NY: Franklin Watts, Divisions of Grollier Publishing. 

Nadakavukaven, A. (1995). Our global environment: A health perspective. Prospect Heights, IL: Waveland Press, Inc. 

New York State Public Service Commission. (1998). Environmental disclosure: A consumer's guide. Albany, NY: Author. 

...(nd). Tales and trails: Central Leatherstocking Country Region: I love New York. Herkimer, NY: Oneida County Convention and Visitor's Bureau. 

....(nd). Adirondack Journeys: A guide to travel in the Adirondacks: I love New York. Plattsburgh, NY: Adirondack Regional Tourism Council. 

Portney, P.R. & Stavins, R.N. (Eds.). (2000). Public policies for environmental protection. Washington, DC: Resources for the Future. 

Thomas, B. (1978). The swamp. NY, NY: W.W. Norton & Co., Inc. 

Utica Marsh Council, Inc. (1989). A marsh for all seasons: Information and teacher's guide for Utica Marsh. Utica, NY: Author. 

Wachter, M. & Tinnley, C. (1996). Appendix B: A sample curriculum based on ecology. Taking back our neighborhoods. Minneapolis, MN: Fairview Press. 

In 2018, the author (Julie Ann Racino) continues as a member of the Section on the Environment and Natural Resources Administration (SENRA) of the American Society for Public Administration located in Washington, DC.

Julie Ann Racino also recommends the Square Market/Community and Policy Studies report, Reflections on community integration in rural communities in upstate New York (Racino, 2014) at http://www.crcpress.com/authors






Tuesday, August 7, 2018

From Cultural Dialogues and Community Organizations to the Growth in NGOs-Gender, Disability and Ethnicity

From Cultural Dialogues and Community Organizations 
to the Growth in NGOs-
Gender, Disability and Ethnicity

Julie Ann Racino

2018

Excerpted from Racino, Julie Ann. (2003). Utica Monday Nite: Arts, Culture, Nature and History at the City Level. Rome, NY: Community and Policy Studies. 

Cultural Dialogues (pp. 8-9)

     The World Trade Center bombings (2001) in New York City, New York held the opportunity to increase the public's awareness of religion and cultures, with the government itself seeking to educate about the diverse beliefs of Nations (e.g., Islam). The multicultural dialogue, similar to the cultural sciences, sought to introduce frameworks (e.g., Arab versus a prevalent Israeli approach to political choices; native American spiritual beliefs about nature and spirit worlds) into Western beliefs dominating fields such as disability in the US. 

    In contrast, the study of the newly formed nation-states (e.g., Curtis 1996) and historical studies based on ethnic and cultural heritage (Pula, 1995) often remained as separate fields of study. Leaders from the Utica area represented in Heritage Park included John G. Moses and E. P. Nassar with prominent writings on Lebanese Americans, James Pula (2002) on diverse ethnic groups (e.g., Italians, Ukranians, Oneida Indian Nation, The Jewish Community, German-American, African Americans, Polish-Americans, Bosnians, Irish, The Welsh, Lebanese), and Zogby International with its agreements worldwide for polling (e.g., Arab Emirate Republics). 

Bell, J.C. & Freuman, L.U. (1999). Stretch your wings: Famous black quotations for teens. Boston: Little, Brown and Company. 

Cleveland, W.L. (1980). Ch. 17: From black September to "Peace in Galilee": Egypt, Israel, Lebanon and the Palestinian National Movement. A history of the modern middle East. (pp. 324-352). Boulder, CO: Westview Press. 

Connor, S. (2000). Cultural sociology and cultural sciences. In: B.S. Turner (Ed.), The Blackwell companion to social theory. (pp. 352-385). Malden, MA: Blackwell Publishers, Inc. 

Curtis, G. (1996, March). Kazakstan, Kyrgystan, Tajikistan, Turkmenisten, & Uzbekistan. Washington, DC: Federal Research Division, Library of Congress. 

D'Argenio, N.L. (1994, November). Italian American heritage. Rome, NY: Italian American Heritage Association.

Flint, D. (1996).  Bosnia: Can there ever be peace? Austin, TX: Raintree Steck-Vaugh Publishers. (children's literature)

Moses, J.G. (1981). From Mt. Lebanon to the Mohawk Valley: The story of Syro-Lebanese Americans to the Utica area. Utica, NY: Utica College. 

Nassar, E. P. (1999). A walk around the block: Literary text and social contexts. Utica, NY: Utica College of Syracuse University, Ethnic Studies Heritage Center. 

O'Connor, S. (1993, June). Disability and the multicultural dialogue. Syracuse, NY: Syracuse University, Center on Human Policy (http://soeweb.syr.edu/the chp/multovl.html).

Pula, J.S. (1995). Polish-Americans: An ethnic community. NY, NY: Twayne Publishers. 

Pula, J.S. (Ed.). (2002). Ethnic Utica. Utica, NY: Oneida Historical Society. 

Thorpe, J. (1979, February). Afro-American Heritage. Rome, NY: Afro-American Heritage Association. 

Traustadottir, R., Lutfiyya, Z., & Shoultz, B. (1994). Community living: A multicultural perspective. In: M. Hayden & B. Abery (Eds.), Challenges for a service system in transition. (pp. 405-426). Baltimore, MD: Paul H. Brookes. 

Vezzosi, W. (2001). Radical ethnic brokers: Immigrant socialist leaders in the United States between ethnic community and the larger society. In: D.R. Gabaccia & F.M. Ottanelli (Eds.), Italian workers of the world: Labor migration and the formation of ethnic states. (pp. 121-138). Urbana and Chicago, IL: University of Illinois Press. 

West, C. (1991). The new cultural politics of difference. In: S. During, The cultural studies reader. (pp. 203-217). London and NY,  NY: Routledge. 

Zogby, J.J. (2001). What ethnic Americans really think. Utica, NY: Zogby International.

In 2016, Syracuse University, School of Education continues to have a Cultural Foundations of Education track which includes disability culture and politics.  Dr. Sari Biklen (now passed), Professor in the Department, is featured in the Education handbooks and chronicles.  O'Connor, Traustadottir, Lutfiyya, and Shoultz were Ph.D. students of Professor Emeritus Steven J. Taylor, then of Dean Douglas Biklen's School of Education (See, wikipedia).

Community Organizations (pp. 23-24)

     A significant development in the 1990s was the renewal of the importance of community organizations (e.g., Berkowitz, 1999) to the future of communities and neighborhoods. Community organizations have tended to be viewed as linchpins to community participation of people with disabilities (e.g., Lutfiyya, 1988; TLS 1979); however, seldom have they been studied and analyzed  from the theoretically and philosophically diverse forms of community integration (See, wikipedia) and community inclusion. For example, by the year 2000,  legal cases were still in process regarding worldwide organizations (with local chapters) which are "all male with auxiliary women's groups" (See, below, 2018), and which often become the core organizations for other decision making by governmental (public) bodies. By 2014, ethnic, disability and gender NGOs were a worldwide phenomenon influencing the political and community changes from governments to roles of governance. 

Berkowitz, B. (1999). Community and neighborhood organizations. In: J. Rappaport & E. Seidman (Eds.), Handbook of community psychology. (pp. 331-357). NY, NY: Kluwer Academic Press. 

Cunningham, J.V. & Kotler, M. (1983). Building neighborhood organizations. Notre Dame and London: University of Notre Dame Press. 

Lutfiyya, Z.M. (1988, March). "Going for it": Life at the Gig Harbor Group Home. Syracuse, NY: Syracuse University, Center on Human Policy, Research and Training Center on Community Integration. 

Rubin, J. (1995). Community-based development organizations. In: R. L. Kemp, Economic development in local government. Jefferson, NC & London: McFarland and Co. 

Takahashi, L.M. & Smutny, G. (2001). Collaboration among small, community-based organizations in turbulent environments. Journal of Planning Education and Research, 21, 141-155. 

Transitional Living Services of Onondaga County. (1979). Oral history: Neighborhood and apartment complexes for people with psychiatric and developmental disabilities. Syracuse, NY: Author. 

Vineyard, S. (1981/1989). Beyond banquets, plaques, and pins: Creative ways to recognize volunteers. Downer's Grove, IL: Heritage Arts Publishing. 

Wandersman, A. & Florin, P. (1999). Citizen participation and community organizations. In: J. Rappaport & E. Seidman (Eds.), Handbook of community psychology. (pp, 247-272). NY, NY: Kluwer Academic/ Plenum Publishing.

In 2018, in the context of GLBT civil rights (ASPA, Denver 2018; Cuomo Administration, New York State, 2016), the context of "gender"(See, Rannveig Traustadottir on gender and disability, Scandinavian Journal of Disability Research), women have been highly successful in the political arenas and in the "composition of the workforces" in the US. The "auxiliary tracks" remain prominent as respected service tracks in organizations, while the leadership (top job, "breaking the glass ceiling") often has changed by "race or gender"; analyses are still in process (Racino, forthcoming, this article, 2018). 

Community Support Services (pp. 24-25, modified)

      The field of mental health has often referred to all forms of community-based services, including large facilities in the local area, as community support or services (e.g., Anthony & Blanch, 1984).  However, the major development efforts across the disability, human service, and community fields are to return to a more person-centered approach (with community infrastructure) to develop "true" community support (e.g., Bersani, 1989) and community support services (e.g., Ferguson, 1986) in the United States and worldwide. "In its ideal forms, community support is a promise and a hope for better communities, relationships, and public and private support of valued lives for all" (Racino, 2000; See, also Center on World Community, Cornell University, 1973). 

       In these contexts, community support represents the new generation of community life (e.g., Bogdan & Taylor, 1999 with doctoral students Lutfiyya, 1991; Walker, 1995), reflecting the diversity of communities, of peoples, and of persons/individuals. As an example of new approaches to community support influenced by the Americans with Disabilities Act are child care initiatives (Rab, Wood, & Taylor, 1995) based on the cooperation of businesses and governments, which incorporate in their fundamental design inclusion of children with diverse needs, including significant disabilities (e.g., Biklen, 1992). The program approaches most promoted are variations of service brokerage with support packages (often Canadian, or "new intermediaries"), which may vary by state and by individual or family. 

Anthony, W. & Blanch, A. (1984). Research on community support services: what we have learned. Psychosocial Rehabilitation Journal, 12, 55-81. 

Bersani, H. (1989). Family and "true" community support in the US: New developments. Community Integration Conferences, US. Syracuse, NY: Center on Human Policy, Syracuse University. 

Biklen, D. (1992). Schooling without labels: Parents, educators, and inclusive education. Philadelphia, PA: Temple University Press. 

Bogdan, R. & Taylor, S. (1999). Building stronger communities for all: About community participation for people with developmental disabilities. Syracuse, NY: Center on Human Policy, Syracuse University. 

Center on World Community. (1973). Formation of the Center on World Community through Annabel Taylor Hall, Interfaith Community. Ithaca, NY: Cornell University. 

Ferguson, D. (1986). Site visit report: Boise Group Homes (state of Idaho). Syracuse, NY: Syracuse University, Center on Human Policy, Community Integration. 

Knoll, J. & Racino, J. (1994). A field in search of a home: The need for support personnel to develop a distinct identity. In: V. Bradley, B. Blaney, & J. Ashbaugh (Eds.), Creating individual supports for people with developmental disabilities. Baltimore, MD: Paul H. Brookes. 

Lutfiyya, Z.M. (1991, April). Tony Santi and the bakery. In: Z. M. Lutfiyya (Ed.), Personal relationships and social networks: Facilitating the participation of individuals with disabilities in community life (pp. 1-14). Syracuse, NY: Syracuse University, Center on Human Policy, Research and Training Center on Community Integration. 

Meyers, M.K., Gornick, J.C., & Peck, L.T. (2001). Packaging support for low-income families: Policy variation across the United States. Journal of  Policy Analysis and Management, 20(3), 457-483. 

Mitchell, A., Stoney, C., & Difcher, H. (1997). Financing child care in the United States: An illustrative catalog of current strategies. Kansas City, MO and Philadelphia, PA: Ewing Marion Kaufman Foundation and Pew Charitable Trust. 

Mount, B., Beeman, P., & Ducharme, G. (1988). What are learning about bridgebuilding? A summary of dialogue between people seeking to build community for people with disabilities. Manchester, Ct: Communitas. 

O'Brien, J. & Lyle O'Brien, C. (1995). Building better communities: People with disabilities and their allies: Lessons from the USA. In: T. Philpot & L. Ward (Eds.), Values and visions: Changing ideas for people with learning difficulties. Oxford: Butterworth-Hennemann, Ltd.

Racino, J. (2000). Personnel preparation in disability and community life. Springfield, IL: Charles C. Thomas Publishers. 

Rab, V., Wood, K., & Taylor, J.M. (1995). Child care and the ADA: A handbook of inclusive programs. Baltimore, MD; Paul H. Brookes. 

Walker, P. (1995). Community-based is not community: The social geography of disability. In: S. Taylor, R. Bogdan & Z.M. Lutfiyya (Eds.), The variety of community experiences (pp. 175-192). Baltimore, MD: Paul H. Brookes. 

        In 2018, the US Centers for Medicaid and Medicare authorized "person-centered projects"in the US, and the AARP Long Term Services and Supports (LTSS) included "Medicaid packages" in 2012 similar to the reports by Meyers, Gornick, and Peck in 2001 for low income families. Respite (Racino, 2014 from 1977, Exceptional Families Resources) and family caregiving continued as desired frameworks in the US versus child care approaches preferred by the middle class income Americans.

      "Individual and family support" is defined as a subcomponent of community services, includes family support, supportive living, personal assistance and supported employment (Braddock, Hemp et al, 2012). In states such as New York, separate legislation was passed in the 1980s to authorize family support and supported employment services; federal CSLA legislation authorized federal networks of "supportive living programs" already regulated in New York in the late 1970s (e.g., Smith 1990) and popular internationally (e.g., Mansell & Ericsson, 1996). Personal assistance services (PAS) was promulgated through the independent living networks in the mid-1980s (e.g., Brown, Heumann & Litvak, 1991) and was adapted for diverse populations (Racino & Litvak, 1999; Weissman, Kennedy & Litvak, 1991). 

       Education professions have moderately expanded licensure which included psychology and inclusive education. US Direct Support Workforces are described in Larson's chapter in Public Administration and Disability (Larson, 2014 in Racino, 2014) subsequent to a US President's Committee on Mental Retardation 1998 (foreword by PCMR member John F. Kennedy Jr.) report on Supporting the Frontline Workforce. These workforces, which are changing "ownership" in 2018 (e.g., Knoll et al, 1992; Knoll and O'Connor, doctoral student employees of the RRTC on Community Integration*, Syracuse University), are based in part on 1970s Executive NGO Offices in states such as New York which rely heavily on government funds. Recently, the American Society for Public Administration has supported Saluting the Public Service as a US international conference theme (ASPA, Atlanta, GA, 2017).

American Society for Public Administration. (2017, March 17-21). Saluting the public service: A bold and noble profession. ASPA Annual Conference Program (pp. 1-204). Atlanta, GA: ASPA at the Sheraton Atlanta Hotel. 

Braddock, D. , Hemp, R., et al. (2012). Figure 6: Trends in I/DD spending using six or fewer persons to define community services: FY 1977-2011. US State of the States in Intellectual and Developmental Disabilities. Denver, CO: University of Colorado, Coleman Institute and Department of Psychiatry. 

Brown, S. E., Heumann, J.E., & Litvak, S. (1991, September). Personal Assistance Services: A Guide to Action (2nd edition). Oakland, CA: The Research and Training Center on Public Policy in Independent Living at the World Institute on Disability in collaboration with InfoUse and the Western Consortium of Pubic Health.

Houser, A., Fox-Grage, W., & Ujavri, K. (2012). Across the states: Profiles of long term services and supports (9th edition). Washington, DC: AARP Pubic Policy Institute. 

Kennedy, J. F. Jr. (1998). Foreword. (iii-iv). Direct support professional initiative.  Opportunities for excellence: Supporting the frontline workforce. Washington, DC: President's Committee on Mental Retardation, Administration for Children and Families, US Department of Health and Human Services. 

Knoll, J., Covert, S., Osuch, R., O'Connor, S., Agosta, J., & Blaney, B. (1992). Supporting families: State family support efforts. In: V. Bradley, J. Knoll, & J. Agosta (Eds.), Emerging issues in family support (pp. 57-97). Washington, DC: AAMR. 

Larson, S., Sedlezky, L, Hewitt, A., Blakeway, C. (2014). Community support services workforces in the US. In: J. A Racino, Public Administration and Disability: Community Services Administration in the US. London, NY, NY: CRC Press, Francis and Taylor. 

Mansell, J. & Ericsson, K. (1996). Deinstitutionalization in Scandinavia, the US and Great Britain. London: Chapman & Hall. 

Racino, J. & Litvak, S. (1999). Part III: Personal assistance services.  In: J. Racino, Policy, Program Evaluation and Research in Disability: Community Support for All. London, NY, NY and Binghamton, NY: The Haworth Press.  http://www.bn.com

Racino, J. (2014).  Ch. 5: Family support, family studies, and community services. In: J. A Racino, Public Administration and Disability: Community Services Administration in the US (pp. 101-122). NY, NY and London: CRC Press, Francis and Taylor. 

Smith, G. (1990). Supportive living: New directions for persons with developmental disabilities. Alexandria, VA: National Association of State Mental Retardation Program Directors. 

Weissman, J., Kennedy, J., & Litvak, S. (Eds.). (1991). Personal perspectives on personal assistance services. Oakland, CA: Research and Training Center on Public Policy and Independent Living, World Institute on Disability, InfoUse and Western Public Health Consortium. 

*The Rehabilitation Research and Training Center on Community Integration at Syracuse University was a federally funded collaborative of Syracuse University, School of Education, University of Minnesota's Institute on Community Integration, University of Illinois-Chicago Human Development Department, the Arc-US and the International Association of Persons with Severe Handicaps.  The RRTCs are a comprehensive research, training and education program of the US Department of Education, National Institute on Disability Research and Rehabilitation. Principal Director: Steven J. Taylor; Research Director, Robert Bogdan; Deputy Director, Julie Ann Racino; then Associate for Information Dissemination, Bonnie Shoultz and Hank Bersani, Project Director.