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Grant Will Help Families Navigate Services for Children with Autism

May 23, 2013 6:15 pm Published by
$145,000 Challenge Grant Will Help Families Navigate Services for Children with Autism
Grant Marks Largest Foundation Gift Ever Made to QSAC
 
New York, N.Y., May 23, 2013– Quality Services for the Autism Community (QSAC) and the New York Center for Autism Charter School (NYCACS), as a sub-grantee, have received a challenge grant for $145,000 from The Heckscher Foundation for Children in support of its “Pathways for the Future” initiative. This collaboration will provide families throughout the region with access to meaningful support for navigating key transition points throughout the life of a child with autism.
The $145,000 grant from The Heckscher Foundation for Children is a matching grant in that it will need to be matched with new donations from the community over the two years. In essence, any donation over the next two years will be doubled with the support from the Heckscher Foundation.
The Pathways program is an educational initiative for parents and providers on transition periods during the life of child with autism and the various programs children are eligible for. The project will also incorporate a one-on-one component regarding support and advocacy on behalf of parents seeking services for their children with autism, so as to assist with program eligibility and linkage to services.
These workshops and conferences will be tailored so as to address key transition points in the life of a child with autism. Specifically, those transition periods are (1) diagnosis, (2) early intervention, (3) preschool, (4) school, and (5) adulthood. This resource will help to inform families about existing public and private programs that their children may qualify for as well as link them to concrete services when possible.
All of the programs offered through this initiative will be free for the family members of children and adults with autism. In the coming weeks, the date and location of AUTISM 2014 will be announced. The annual conference will be open to family members, educators, professionals, and other individuals interested in learning more about services for people with autism and their families as well as the various processes involved with obtaining eligibility for services. .
QSAC’s Executive Director, Gary Maffei said, “The timing of this grant and initiative are critical in that it will coincide with the forthcoming changes associated with the funding of services for people with developmental disabilities. This generous grant from The Heckscher Foundation for Children will ensure that we are well-prepared to assist families as they seek to obtain much-needed services and programs for their loved ones under the current system as well as the future processes.”
This grants marks the largest foundation gift ever to QSAC. If you would like to learn more about the Pathways program or if you are interested in making a donation toward the match campaign, please contact Joseph Amodeo, Director of Development, at jamodeo@qsac.com or (212) 244-5560, ext. 2016.
ABOUT QSAC
Quality Services for the Autism Community is dedicated to providing meaningful educational, residential, habilitation, and support services for children with autism and their families. Today, QSAC serves more than 5,000 people per year throughout New York City and Long Island. Visit QSAC online atwww.qsac.com.
ABOUT THE HECKSCHER FOUNDATION FOR CHILDREN
The Heckscher Foundation was founded in 1921 to promote the welfare of children in New York and elsewhere throughout the United States. Today, it provides grants to youth-serving organizations in the fields of education, family services, child welfare, health, arts and recreation.

In-Home Services

May 10, 2013 5:30 pm Published by

“Comm Hab”, “Respite”, “Family Support”, “Parent Training”…..In-home services for families who have a child with Autism Spectrum Disorders (ASD) can go by many names. This range of services and supports often means the difference between a family staying intact or coming apart at the seams. Jimmy’s in-home worker spent months building rapport, gradually coaxed him out of his room to play, and is now able to go with him to leave the house for necessary medical appointments. Elena’s worker helps her find places to visit in the city and together they plan how they will get there. And QSAC Respite providers enable parents to attend family events, to accompany siblings to school events, or simply to relax in another part of their home, knowing their loved one with ASD is in capable and caring hands.

There is strong research supporting in-home services. Parents who receive more social supports are better able to manage their child’s challenging behavior (Michelson, et al., Clinical Child and Family Psychology Review, v16 n1 p18-34 Mar 2013; Boyd, Focus on ASD Other Developmental Disabilities, Winter 2002 vol. 17 no. 4, 208-215), have better overall interactions with their children (Koegel, Bimbela, and Schreibman, 1996, Journal of ASD and Developmental Disabilities Volume 26 (3)), and see more skill gains in their children.

There are several aspects of in-home services that are distinctive. First, the relationship between families and in-home staff can be very close. Many times in-home workers stay with a particular family for many years, building a warm and caring relationship. In-home workers often have more interactions and more personal interactions with family members than might be possible in other education and social service settings. This presents advantages for both staff members and families. An easy and close relationship allows in-home staff members to see the daily impact of their work, and how their effort helps the family they’re working with. Families have a comfortable connection to someone who can provide the information and help that meets their individual needs.

Another unique aspect of providing services in family homes is that the focus is on the exact skills that the child or adult will use at home and in the community. In-home staff members have the opportunity to work on skills that have a direct impact on the day-to-day life of an adult or child with ASD and his or her family. In-home supports also use the instructions that the child or adult will hear every day. For families and consumers, this focus leads to greater independence at home and in the community and access to a wider range of family and community activities. Instruction in homes and communities also provides opportunities for children and adults with ASD to generalize skills that were learned in school or at Day Hab.

Finally, teaching at home or in the community allows both families and staff members to use the natural supports available to the child or adult with ASD. Siblings, parents, other family members, neighbors, store owners, and others in the community can be peer models, social interaction partners, and natural reinforcers for new skills. This provides tremendous benefit to the family and consumer who gain support for new skills and gain skills that they can use right away. Using natural supports benefits the in-home workers as well. Using the other people in a child or adult’s life can make a teaching interaction rich and fun.

In home services, whether they are Respite, Community Habilitation, or another form of family and parent support, provide essential benefits for families and expand consumer skills. Working in homes and communities can create close staff-family relationships, lets staff work on functional skills, and makes use of the wide range of natural supports available to children, adults, and families. In-home services are an integral and important part of many consumers’ overall supports.

By Susan G. Izeman, Phd, BCBA-D

Sue Izeman is QSAC’s Director of Family Services. This department provides in-home Respite and Community Habilitation services throughout New York City and Nassau County.

Sexuality education for students with autism spectrum disorders

May 6, 2013 5:24 pm Published by

Individuals with autism spectrum disorders (ASD) demonstrate the same needs for relationships as most of us do. Unfortunately, a deficit in social skills can make relationship building a challenge for the individual with ASD. Social skills training does not often target the skills required for adult relationships. These topics may get placed on the back burner, and/or are not addressed at all. There exists a hidden curriculum within adult relationships, and one such topic includes sex education. Individuals with ASD experience the same bodily changes as their typically developing peers.  The topic of sex education is an uncomfortable topic for many families, but one that requires attention. Individuals with ASD usually require instruction and support in order to develop appropriate sexual behavior. We are currently faced with a lack of research concerning sex education within the ASD population.


The following is a two part blog written by Dr. Peter F. Gerhardt, Ph. D. for the Sage Colleges Achieve Ideas.  Dr. Gerhardt discusses the definition of sexuality, its history, as well as guidelines and considerations for the instruction of sexuality. Dr. Gerhardt is a leading expert in the field of autism and issues such as sex education.


By Dr. Peter F. Gerhardt, Ph. D.


Sexuality education for students with autism spectrum disorders, Part I

Although generally difficult to talk about in an open and honest manner, sex and sexuality are central to understanding ourselves. Comprehensive sexuality instruction focuses primarily on who the individual is as a sexual being and what that may mean in his or her life. Sexuality education involves instruction beyond just basic facts and knowledge and includes issues such as personal safety, individual values, gender-role identification, physical maturation and an understanding of the complex social dimension of sexuality and sexual behavior. Therefore, sexuality education should be considered an integral element of education for learners with an autism spectrum disorder (ASD), assuming that the goal is for them to be a safe, competent and confident adults.

Definition of sexuality
Human sexuality presents us with very complex subject. As defined by the World Health Organization (2004), sexuality is:

a central aspect of being human throughout life and encompasses sex, gender identities and roles, sexual orientation, eroticism, pleasure, intimacy and reproduction. Sexuality is experienced and expressed in thoughts, fantasies, desires, beliefs, attitudes, values, behavior, practices, roles and relationships. Sexuality is influenced by the interaction of biological, psychological, social, economic, political, cultural, ethical, legal, historical, religious and spiritual factors. (p. 2)

Similarly complex is the process of sexual development, which has been described as a “multidimensional process intimately liked to the basic human needs of being liked and accepted, displaying and receiving affection, feeling valued and attractive and sharing thoughts and feelings” (Murphy & Elias, 2006, p. 398). What both of these definitions boils down to is that sexuality is simply part of being human. Avoidance of any discussion of sexuality and/or sexuality instruction as it pertains to learners with ASD constitutes, in effect, a tacit denial of their humanity which, I think we all agree, is unacceptable.

History
For much of our history the very concept of individuals with any disability label being viewed as sexual beings was, by and large, anathema to the thinking of the time. Up until fairly recently, the predominant method of addressing sexuality in learners with developmental disabilities was denial and suppression (Watson, Venema, Molloy & Reich, 2002). Not surprisingly, neither approach was effective. Learners with ASD are, by definition, sexual beings, and to deny them that status is to deny them appropriate access to a critical part of their life, their status as an adult and their ability to be safe from harm.

Components of sexuality education
Sexuality education actually starts very early in life (differences between boys and girls; using the boys room or girls room, etc.) and continues well into adulthood (dating, marriage and parenting). Comprehensive sexuality education consists of instruction in three distinct (yet interrelated) content areas:

1) Basic facts/accurate information
2) Individual values and
3) Social relationships.

Effective sexuality education for learners with ASD can be complicated by the language/communication problems and social deficits associated with the disorder. And while sexual feelings and interest may be high, a primary information source available to neurotypical teens, (i.e., other teens), is often not available to learners on the spectrum (Volkmar & Wiesner, 2003). This often results in a situation where information is not taught in school, not addressed by family and not provided by friends resulting in little, if any, appropriate skill development. But make no mistake: teens will encounter information about sex as part of daily life, whether it’s from the media, overhearing locker room talk, watching the physical actions of couples at school or in the community or being the subject of insensitive, sexually-oriented teasing by others.

In light of the social challenges experienced by even the brightest learner with ASD, direct training and education about sexual issues needs to be provided, commensurate with each individual’s receptive and expressive abilities. This direct social skills instruction should be two-pronged: on one hand discussing the complexities of relationship building and on the other hand more concrete discrimination training as to who can, and who cannot, help in the bathroom, with menstrual care, at the doctor’s office, etc.

References
Murphy, N.A. & Elias, E.R. (2006).  Sexuality of children and adolescents with developmental disabilities. Pediatrics, 118 (1), 398-403.

Volkmar, F.R. & Wiesner, L.A. (2003). Healthcare for children on the autism spectrum: A guide to medical, nutritional and behavioral issues. Bethesda, MD: Woodbine House.

Watson, S., Venema, T., Molloy, W. & Reich, M. (2002). Sexual rights and individuals who have a developmental disability. In D. Griffiths, D. Richards, P. Fedoroff & S. Watson (Eds.). Ethical Dilemmas: Sexuality and Developmental Disability. Kingston, NY: NADD Press.

World Health Organization (2004). What constitutes sexual health?Progress in Reproductive Health Research, 64Accessed on line (8/15/06) at http://www.who.int/reproductive-health/hrp/progress/67.pdf

Sexuality education for students with autism spectrum disorders, Part II

In general, there are three basic goals for sexuality instruction – sharing basic facts/accurate information; developing individual values and teaching appropriate social relationship skills – and these should form the structure of any program for learners with autism spectrum disorders (ASD). Age and functioning level will affect how information is shared, but adults should use care not to restrict education because of their own preconceived notions about what these learners ‘need’ or ‘want.’ Other guidelines include:

·         Think ahead and be proactive. Waiting until something inappropriate happens is not an option. For example, training in appropriate menstrual care should start prior to onset of a young woman’s first period if it is to be most effective (and potentially, less challenging).

·         Start when children are young. Don’t make the mistake of waiting until the individual expresses interest in sex for education to begin. Teaching children about personal safety issues such as good touch/bad touch, consent and personal boundaries should start at an early age.

·         Be concrete and factual in presenting information, but also calm and supportive in all your interactions. References to the “birds and bees” as an introduction to sex or comparisons of the vulva to “petals on a flower” will, in all likelihood, be misunderstood. Much of the information is factual, based on biology. Use visuals whenever possible.

·         Break larger areas of information into smaller, more manageable blocks (task analyze). For some individuals discussing the biological underpinnings of pregnancy may be quite appropriate while for another a more simplistic explanation may be sufficient.

·         Always remember that sexual behavior is social behavior and, therefore, the social dimension of sexuality needs to be addressed when and wherever appropriate. “Hidden rules” regarding sexual behavior are pervasive. Masturbation, not often thought of as having a social component, does indeed, and it includes such social rules as 1) don’t masturbate in front of others, 2) your bedroom is the appropriate place for masturbation and 3) close the door to your bedroom if you want to masturbate, etc.

·         Keep in mind that sexuality education needs to be consistent, and the skills learned may need to be monitored to make certain they are retained. Once a young woman learns who can/cannot help her with menstrual care, the hope is that this skill is rarely practiced in real life. It may have to be revisited at different times across her life to assure maintenance of these very important skills.

Sexuality education with learners with ASD is often regarded as a “problem because it is not an issue, or is an issue because it is seen as a problem” (Koller, 2000, p. 126). In practice this means we generally ignore sexuality as it pertains to learners with ASD until it becomes a problem, at which point we generally regard it as big problem. A more appropriate and, ideally, more effective approach is to address sexuality as just another, albeit complex, instructional focus, the teaching of which allows learners to be safer, more independent and more integrated into their own communities, resulting in a more positive quality of life. As noted by Koller (2000), the question no longer can be if sexuality education should be provided, but rather how it will be offered.


References
Koller, R., (2000). Sexuality and adolescents with autism. Sexuality and Disability, 18, (125-135).

Sobsey, D. (1994). Violence and Abuse in the Lives of Persons with Disabilities: The End of Silent Acceptance? Baltimore:  Paul H. Brookes Publishing.



Posted by Rocio E. Chavez, MA, MSEd, BCBA 

ABOUT US

QSAC is a New York City and Long Island based nonprofit that supports children and adults with autism, together with their families, in achieving greater independence, realizing their future potential, and contributing to their communities in a meaningful way by offering person-centered services.

QSAC pursues this mission through direct services that provide a supportive and individualized setting for children and adults with autism to improve their communication, socialization, academic, and functional skills.