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ReachOut e-Diversity News - June 2016

An Electronic Publication of the Ohio Developmental Disabilities Council

You can download the PDF version of this newsletter which includes pictures. And be sure to join the ReachOut e-Diversity News e-mail list to receive notifications when new editions are available. 

In this issue:

It is the policy of the Ohio Developmental Disabilities Council to use person-first language in items written by staff. Items reprinted or quoted exactly as they originally appear may not reflect this policy.

The purpose of Reach Out e-Diversity newsletter is to promote interagency collaboration and coordination that result in agencies providing culturally competent services to the unserved/underserved populations in Ohio. Reach Out e-Diversity News is produced by The Outcomes Management Group, Ltd. This product is funded all or in part by the Ohio Developmental Disabilities Council.


Cultural and Linguistic Competence of Family Supports

The Compelling Need for Family Supports

The federal Maternal and Child Health Bureau (MCHB) of the Health Resources and Services Administration (HRSA) defines children and youth with special health care needs as those who have or are at increased risk for chronic physical, developmental, behavioral, or emotional conditions and who require health and related services of a type or amount beyond that required by children generally. The families of children and youth with special health care needs know, however, that these children also require more intensive and specialized day-today care than other children. Although all families encounter a series of triumphs and challenges in raising their children, families raising children and youth with special health care needs experience an additional set of challenges that may involve:

  • providing medical treatments, operating medical equipment, or managing complex medical regimens that require a high degree of skill with minimal training and support;
  • providing specialized or additional assistance in daily living tasks such as eating, dressing, bathing, and toileting;
  • physically moving and lifting children who are beyond the toddler years;
  • managing complex and atypical behavioral and emotional problems;
  • attending frequent treatment appointments and meetings related to service and care plans for their children;
  • experiencing financial difficulties due to no insurance or underinsurance for the child’s health and other service needs;
  • experiencing increased emotional stress due to personal reactions to a child’s illness or disability and to possible stigmatization, personal reactions, and social exclusion from family, friends, and community;
  • experiencing stresses on family and marital relationships; and
  • providing care and support beyond the traditional childhood years (including elderly family members caring for adults), because the system does not adequately provide for transition to a productive and independent adulthood for youth with special health care needs (Abelson, 1999; Sherman, 1995; Donelan et al., 2002; Agosta & Melda, 1999). Families face many of these challenges while dealing with a fragmented, complex system of services and supports.

On the broadest level, family supports are “a set of beliefs and approaches to strengthening and empowering families and communities so that they can foster the optimal development of children, youth and adult family members” (Family Support America, 2004). More specific to children with special health care needs is the definition in Title II of the federal Family Support for Children with Disabilities Act of 2000 that is the model for much state legislation and other initiatives:

“Family Support for Families of Children with Disabilities means supports, resources, services, and other assistance provided to families of children with disabilities pursuant to State policy that are designed to:

A. support families in the efforts of such families to raise their children with disabilities in the home;

B. strengthen the role of the family as primary caregiver for such children;

C. prevent involuntary out-of-the-home placement of such children and maintain family unity; and

D. reunite families with children with disabilities who have been placed out of the home, whenever possible.”

Effective family support programs make use of structured services as well as informal or natural supports such as extended family, friends, neighbors, and faith communities. They build on the strengths of and help address the unique challenges of each family. Effective supports are family centered, based on the culture, values, preferences, and needs of the family, and provided in the family’s preferred language.

Examples of family supports include in-home care and services; temporary relief and respite care; child care; financial assistance; assistance in accessing and coordinating needed resources; family-to-family support; education and skill building to provide effective parenting and care; modifications to the family’s dwelling; future financial planning; and social, spiritual, and emotional support for all family members (Agosta & Melda, 1999). No predetermined list, however, can capture the range of possibilities to meet each family’s needs at any given point in time. At the broadest level, family supports are anything the family says it needs for the development of its children and the functioning of the family unit as a whole.

Cultural Factors That Impact Family Supports

Given the diversity of families in this country, it is key to understand how cultural factors impact family support. Culture structures perceptions, shapes behaviors, and is the total way of life because it tells group members how to behave and provides their identity. Cultural factors that reflect diversity among individuals and groups involve much more than race and ethnicity. Such factors include, but are not limited to, language, national origin, tribal or clan affiliation, gender, age, education, literacy, socioeconomic status or class, sexual orientation and sexual identity, religious or spiritual beliefs, geographic or regional patterns, legal status, acculturation, and assimilation. Providing supports to fathers is different from providing supports to mothers. Successfully supporting young parents may require different approaches from supporting grandparents raising their grandchildren or other relatives providing kinship care. Newly immigrated families may have different needs from families of the same background who have lived in this country for generations. Designing and delivering supports will also differ based on geographic locale such as urban, suburban, rural, and frontier areas of the country. This complex array of factors impacts the way in which family supports are conceptualized, designed, and delivered.

Policies to Promote and Sustain Cultural and Linguistic Competence in Family Supports

Organizations need to align policies, structures, and practices to resource and institutionalize cultural and linguistic competence in the provision of family supports. At a minimum, organizations should commit to the following:

  • A mission statement that articulates values and principles for culturally and linguistically competent family supports.
  • Establishment of policy, structures, and resources to conduct organizational selfassessment of cultural and linguistic competence at regular intervals.
  • Strategic planning processes that incorporate principles and practices of cultural and linguistic competence into all aspects of program design, implementation and evaluation. The following sections are provided to assist organizations that provide family supports to assess their policies and determine directions for future policy development and implementation that advance and sustain cultural and linguistic competency. They address cultural and linguistic competence in how family supports are provided, what supports are provided, where supports are provided, and who should provide supports. Each section offers a description of these areas and a checklist of suggested policies for organizational cultural and linguistic competence.
  • Cultural factors affect how family supports are offered. Beliefs and values that make it difficult for some families to access supports include cultural and family sense of stigma associated with physical and mental illness or disability, traditions that discourage going outside the family for support, or reluctance to take what may be perceived as government “handouts.” Family patterns related to decision-making and help-seeking behaviors affect the way in which supports are sought and chosen.

Supporting Family Values of Self-Reliance

Mrs. G. describes the first time she applied for family supports through her state’s Developmental Disabilities program. She has twin girls with severe autism and behavioral problems. She and her husband had always paid for their services privately or through the limited coverage of their health insurance. She had been comfortable in advocating for her daughters’ rights under the Individuals with Disabilities Education Act—after all, the family paid taxes and these services were a right for her daughters. She and her husband had always avoided seeking services from the state, because in the country where they grew up only the poorest of the poor took hand-outs. Her husband often noted that he had come to the United States with $10 in his pocket. Through hard work, he had completed his education and now supported his family very well. Mrs. G. also felt shame at the thought of asking for help. It took a crisis—both daughters trying to run away—to finally bring her to ask for emergency help. She cried the whole way to the office to apply for the help they needed in creating a structured behavior plan at home. The staff emphasized her needs and what she and her family couldn’t do for their children, and this only intensified her sense of shame. In retrospect, Mrs. G. says that she would have felt much more comfortable asking for help had the family support organization focused on how much the family’s care and expenditures contributed not just to her own family, but to saving the public system’s resources.

Policy Implications

The NCCC recommends that organizational policies (1) emphasize strengthsbased assessments that identify and value the family’s contributions to the care of their children, (2) consider models such as sliding-fee scales that allow families to make a contribution, and (3) create job descriptions and expectations for employees that require and value interacting with families in ways that reflect reciprocity and partnership.

To address cultural and linguistic competence in how family supports are provided, organizations should consider the following:

  • Structures for diverse family and community representation on planning, advisory, and/or governance boards.
  • Policies related to procurement and reimbursement for family participation that:
    • respect the time spent and expenses incurred by families who participate in planning, advisory, governance or training activities and
    • take into account the impact on issues such as eligibility for income-based benefits, immigration status, and others.
  • Position descriptions and performance review criteria for staff and volunteers that include the knowledge, attitudes, and skill sets needed to work effectively in cross-cultural situations.
  • Policies and resources to support ongoing staff/volunteer development and in-service training on culturally and linguistically competent values, principles, and practices.
  • Policies, procedures, and fiscal planning for the provision of language access, in keeping with Title VI of the Civil Rights Act, including:
    • interpretation and translation services;
    • accessible telecommunications systems; and
    • materials in alternative formats for individuals with limited English proficiency, low literacy or no literacy or with disabilities that impact communication and use of written materials.
  • Policies and procedures incorporate the Office of Minority Health standards for Culturally and Linguistically Appropriate Services (CLAS standards).
  • Policies and resources to support ongoing staff/volunteer development and in-service.
  • Policies and procedures to periodically review the current and emergent demographic trends for the geographic area served to determine needs for staff or volunteer training and different language access services.
  • Policies, guidelines, fiscal arrangements, and quality assurance mechanisms that allow for maximum flexibility and family choice in how services are delivered, including:
    • concern for confidentiality;
    • options for social and emotional support besides support groups; and
    • choice of providers, including extended family and natural support networks
  • Policies that minimize competition among families for resources and that develop a rationale related to demographics of the area served for allocation of limited resources.
  • Policies and practices that create reciprocity with families and recognize the contribution of families to caring for their own children and to the system as a whole.

For additional information, contact: National Center for Cultural Competence by phone at (202) 687-5387; by email at cultural@georgetown.edu or on the web at http://nccc.georgetown.edu/

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Mocking is Bad Acting

By Shari L. Cooper

Most people were taught not to mock others when they were young. Yet, I find many still do even as adults, and often get paid to do so.

During my high school years, “In Living Color” was the show to watch. Entertainers such as Tommy Davison, Marlon and Damon Wayans, Jennifer Lopez, and Jim Carey got their start there. The show was funny most of the time. But there was one particular character I wasn’t too fond of: Handi-Man, played by Damon Wayans. It was apparent Wayans was portraying a person with cerebral palsy. Many of Handi-Man’s movements and impaired speech were very similar to mine. Unlike me, this Handi-Man wore a blue leotard, and stitched on it was the wheelchair symbol shown on most accessible parking signs.

Going to school after the episode aired was pure hell, because some of the students were acting just like Handi-Man, which angered me and caused me to feel downhearted. It seemed Wayans had played the character for cheap laughs, using a physical disability that causes a speech impediment and stiff limbs as a prop.

I recently learned Wayans was born with a clubfoot. The comedian often shares his experiences of having a disability in his stand-up routines. And I do kind of understand his logic of finding the humor in your situation. For instance, sometimes a bill collector calls and ask for me; after hearing my voice, he or she hangs up, because they think they are being punked. I have the biggest laugh when that happens.

Wayans also talks about being bullied as a child and how much pain he endured from wearing an orthopedic shoe, and for this, I have much empathy for him. By creating a character like Handi-Man, Wayans attempted to show there can indeed be a superhero with a disability who fights for equality. I just find the way he went about his creation to be degrading to the disability community. There’s no humor in mocking someone over a birth defect he or she was born with and has no control over.

I know actors get paid a substantial amount of money to portray others, but when does acting turn into mocking?

A leading nonprofit that works for fair representation of those with disabilities is calling on Hollywood to clean up its act. “We are calling on (them) … to consider who they hurt when their content contains material that mocks and marginalizes children and adults living with special needs and disabilities,” Family Member president Hannah Jacobs said. It was a win for the disability community in 2010 when legislation was passed banning the word “retarded” from federal health, education and labor laws. While Hollywood has also primarily stopped using the word, it continues throwing around cheap actions and mannerisms in major moneymaking movies, as if to say, “It’s cool, we know this isn’t proper, that’s why we’re going to use it anyway because, you know … shock value.” Of course, anyone who hasn’t been educated on disabilities may pick up on this word and start using it, thinking it’s the “in” thing to do.

I am one who loves watching good movies. I also like watching television comedies that seem to mock everyone equally. I’m not oblivious to the fact that Hollywood isn’t going to cater to people just because they may have disabilities. What Hollywood must realize is many learn about disabilities through these productions, so a more empowering approach to show the strength of people with disabilities would be greatly appreciated.

My friends with disabilities and I were taught to have tough skin, but there’s only so much one can take. If Hollywood continues mocking people with disabilities, guess we will have to fight until change is made for a positive image on television and in movies. I’m up for the battle!

Shari L. Cooper is a Sinclair Community College graduate, works as the Community and Staff Relations Associate at Goodwill Easter Seals Miami Valley. She is an active advocate for people with disabilities, having serving as a member of the Ohio Developmental Disabilities Council. In 2008, she was elected to the Board of Directors for the National Association of Councils on Developmental Disabilities and was selected Ms. Wheelchair Ohio.

Did You Know?

ABC television network has picked up the 30-minute series “Speechless.” The show stars actress Minnie Driver as Maya DiMeo, a mother “who will do anything” for her husband and kids including her eldest son JJ, who has special needs. JJ is played by Micah Fowler, an actor who has cerebral palsy in real life. He previously appeared in the 2013 film “Labor Day.” The series is set to air this fall on Wednesdays at 8:30 pm ET right before “Modern Family.”

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Feds Allocate Millions for Special Education Training

With an eye toward increasing the number of school professionals prepared to serve kids with disabilities, federal officials are doling out millions of dollars to enhance training programs.

More recently, the significance of the well-prepared teacher as the within-school variable having the greatest influence on a student’s learning has been widely documented and recognized. The current emphasis on teacher accountability and high expectations for individuals with exceptionalities continues to make imperative that all special educators are well-prepared, career-oriented professionals with the conditions that allow them to provide individuals with exceptional needs the most effective interventions and that encourage entering special educators to become careeroriented special education professionals (Gersten, Keating, Yovanoff, & Harniss, 2001; Darling-Hammond and Loewenberg Ball, 1997).

The U.S. Department of Education said this week that it will distribute $13.4 million in grants to colleges and universities across the country to beef up special education training.

Of the grants, $4.1 million will go toward helping places of higher learning prepare doctoral students to take on administrator and faculty positions in special education, early intervention and related services, the Education Department said.

Meanwhile, $9.3 million is tagged for training teachers and other professionals to support children with disabilities in early intervention programs as well as regular and special education environments.

“We are committed to promoting equity and excellence at every level of the education system,” said Sue Swenson, acting assistant secretary for the Education Department’s Office of Special Education and Rehabilitative Services in announcing the funds. “These grants will give special education teachers and leaders the skills to help America’s students with disabilities achieve their academic potential.”

The grants ranging in size from about $174,000 to 250,000 each are headed to more than three dozen academic institutions.

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Senator Calls for Full Funding of IDEA

by Shaun Heasley

An influential U.S. senator is urging his colleagues to work toward plugging a special education funding shortfall of more than $17 billion.

U.S. Sen. Chuck Schumer, D-N.Y., is calling for the federal government to fully fund the Individuals with Disabilities Education Act.

“For far too long, federal funding for special educational services has fallen short by tens of billions of dollars,” Schumer said. “With millions of children living with autism and other developmental disabilities, it’s time to provide full federal funding towards the Individuals with Disabilities Education Act, which will help our nation’s children thrive and help countless families breathe easy knowing their kids have the services needed to succeed.”

When Congress originally passed the IDEA in 1975 mandating special education services in the nation’s public schools, lawmakers committed to footing 40 percent of the bill, leaving states and local officials to pick up the rest.

But that never happened. In fiscal year 2016, the federal government plans to cover just 16 percent of the cost of special education for kids ages 3 to 21, Schumer said, a figure that’s some $17.85 billion shy of the original commitment.

In a letter to leaders of the Senate Appropriations Committee, Schumer is asking his colleagues to increase funding for special education calling it “critical that we work to close the gap” between current spending and full funding.

This is not the first time that a lawmaker has called for increased funding for IDEA. Multiple bills have been introduced in Congress over the years designed to spur the federal government toward full funding, but they’ve been unsuccessful in garnering much traction.

Reprinted from Disability Scoop

Did You Know?

Federal officials are reminding states and schools that they have an obligation to provide special educati on services to kids with disabilities even if they live in institutional settings.

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Fathers of Children with Autism Needed

If you are the father of a child with autism (moderate to severe), ages 5 to 12, and you co-parent this child with a female partner, we need your help for an online survey.

The study concerns the support needs of fathers of children with autism. The world does not know enough about you and your needs for support! Knowledge gained from your help may positively influence better delivery of support for fathers by aiding program planners in designing, implementing, and evaluating support opportunities.

Your participation requires you to spend about 30 minutes online. You will:

  • Answer questions on several prescreening screens. If you do not qualify, the system will immediately notify and you will not have to spend any more time.
  • If you do qualify, you will take a survey about father support.

As a small appreciation for your participation in completing the survey, you will receive your choice of one $10 gift cards from three major retailers.

Please go online to: https://bostonu.qualtrics.com/SE/?SID=SV_cMCchdXBRS5ZASV to take the survey and to order your gift card, once you complete the survey. If you prefer to do a written version by snail mail, please call: 617-358-2958.

Thank you so much for your help. Besides helping with valuable research, you are also helping me with my dissertation, the final project before I earn my doctoral degree from Boston University. Stephen Nadel, MEd, MSW, LICSW.

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