Adult Services & Residential Think Tank

Autism One/Generation Rescue 2010 "Autism Redefined" Conference
Adult Issues Think Tank
Overview

Saturday, May 29, 2:00 – 6:00 pm
Adult Issues Think Tank

Where will my adult child with autism live, learn, work, play, heal, and find friends after the school bus stops coming?   Join the discussion with a high-powered panel of parents and professionals who are creating model homes, jobs, schools, and communities for a safe and productive future.  Panelists and audience participants will ask and begin to answer the following questions: How can I know that my adult child will be safe after leaving home?  What are the various models for group homes and residential communities?  Which ones have been successful? Where will the funding come from?  What about vocational options?  What about special diets and medical care?  Speech therapy?  Vocational choices?  What about romance and sexuality?  Will my adult child experience acceptance and understanding?  How can I best stay involved in my child’s life?  Where will I go for help with my post-traumatic stress disorder after my adult child leaves home?  Who will advocate for my child after I am gone?

Panelists will offer presentations on the design and delivery of new and existing models for providing high quality residential, job, educational, medical, and community support for adults with autism.  This is an open panel discussion which will result in a consensus paper suitable for mailing to legislators.  Bring your ideas, issues, and questions as we work together to build a better future for our children. 

01 Jim Adams, Ph.D.
Presenter

Bio:  Jim Adams, Ph.D. is a President's Professor at Arizona State University, where his research is focused on the causes of autism and how to treat it. He is also president of the Autism Society of Greater Phoenix, and is co-leader of the Autism Research Institute/Defeat Autism Now! Think Tank. His research includes toxic metals/chelation, nutrition (vitamin/minerals, essential fatty acids, amino acids), neurotransmitters, and GI issues. He is the proud father of a daughter with autism.

“Beyond Group Homes:  Creating Residential Communities”

Abstract: For most adults with autism/Asperger’s, one of the largest challenges is loneliness and depression due to lack of friendships and social interaction.  Instead of small isolated group homes or other isolated living situations, an alternative is the creation of residential communities focused on providing multiple opportunities for social interaction for people across the spectrum.  This presentation will discuss some preliminary ideas and concepts.”

Dr. Adams is interested in exploring the following issues and asking the following questions:
1)  Education:  What educational/training options are available?
2)  Housing:  What housing options are available, from group homes to supported living to living communities?
3)  Recreation/Social:  What recreational and social opportunities are available, from Special Olympics to support groups?
4)  Work:  What work options and supports are available, from housework to volunteer work to employment at appropriate levels?
5)  Funding:  What funding sources are available for all the above:  education, housing, recreation, work.

02 Dr. Dan E. Burns
Chair

Bio: Dan E. Burns graduated from Oklahoma State University with a Ph.D. in English in 1979. In 1990 his third child, Benjamin, was diagnosed with autism. Dan and his wife, Susan, explored early biomedical and behavioral treatments. In 1992 the couple divorced and Dan became the primary advocate for his severely autistic, profoundly retarded son.  In 2006, Dan and his former wife joined forces to implement the new biomedical protocols coming out of the Defeat Autism Now! movement, including diet, antifungals, antivirals, anti-inflammatories, nutritional support, and detoxification. 
Dr. Burns’ memoir, Saving Ben: A Father’s Story of Autism, won first place in the 2008 Mayborn Literary Nonfiction Writers Conference and is published by UNT Press. The book tells of a three-year-old child's regression as an infant into autism and his slow journey toward recovery as a young adult.   Burns relates struggles with medical providers, the school system, and extended family alike as he refuses to surrender against all odds.  Saving Ben reached the number one Amazon sales rank in the special needs category in September, 2009, and is into its third printing; People magazine calls it “a great read.”  Dr. Burns is a Rescue Angel for GenerationRescue.com and is Adult Services Liaison AutismOne.org.  Dan, Susan, and Ben live in Dallas Texas.  See their story at www.SavingBenBook.com

Dan E. Burns is interested in find answers to the questions raised in his blog at http://tamupress.blogspot.com/2010/01/dan-burns-on-autism-and-what-to-do.html

03 Sonja Hintz, RN
Participant

Bio:   Sonja Hintz, RN, graduated from Marquette University nursing school in Milwaukee, Wisconsin. At the age of 16 she worked at a group home for developmentally disabled adults. Professionally she worked as a public health nurse, psychiatric nurse, and neonatal intensive care nurse. After the birth of her second child, Sonja was compelled to reevaluate the traditional medical paradigms she had espoused in order to meet the needs of her son who was identified as being on the autism spectrum at 3 years old. Through the use of integrative therapies such as therapeutic diet, homeopathy, herbs, vitamins, essential oils, and chelation, in addition to traditional therapies (e.g., speech and language, occupational therapy, etc.), Sonja's son has recovered from autism. For the past 30 years, she has applied what she has learned to help other children improve the quality of their lives. Currently, Sonja is in practice at True Health Medical Center with Dr. Anju Usman

Sonja Hintz
… is interested in finding the answers to these questions:

1.Individualized placement: How will the individual diagnosed with autism needs be assessed in regards to placement and level of ability to maintain their safety and personal level of ability?

2. Medical care: How will the placement take into consideration their medical issues and need for support?

3. What is the state's criteria to receive assistance when it comes time to live independently from parents or current caregivers, and what assistance do they have to offer?

4.What current organizations are out there that are developing models of living that address the needs of someone diagnosed with autism?

5. Who are the current players in government (federal/state/local) that are assigned the task to evaluate funding and develop bylaws for funding adult services for the disabled?

04 Anna Hundley
Participant

05 Barbara Fischkin
Participant

Bio: Barbara Fischkin is known to autism parents as the host of "Maverick Mama," the Autism One Radio Internet program and as the author of mom.notcalm, a weekly column posted on Spectrum magazine's online edition. She is the author of three books - fiction and narrative nonfiction - and is an award-winning journalist who has published in major national and international publications for more than three decades, reporting from Latin America, Asia, Europe, and Long Island. Her first book Muddy Cup: A Dominican Family Comes of Age in A New America (Scribner 1997) has been hailed as a landmark work on immigration and the Dominican Diaspora. Ms. Fischkin's satiric journalism novels, the first offerings in her Lost Tribe of Ronkonkoma Series, are titled Exclusive and Confidential Sources (Bantam Dell 2005/6). Confidential Sources also depicts a family's struggle with autism. Ms. Fischkin's literary agent Frank Weimann is currently presenting proposals by Ms. Fischkin for book, film and television projects related to autism. www.barbarafischkin.com & www.spectrumpublications.com

Barbara Fischkin  is interested in discussing her hopes and fears.
 
1. I was afraid the staff would be untrained and slip on the job and that he would run away and drown.
 
2. I am afraid that no one will get the fact that he needs romance in his life -- and sex.
 
3. There is a great need for counseling of parents. Parents of young adults with autism, particularly those who have been violent or aggressive - do seem from anecdotal evidence to suffer from post traumatic stress syndrome when their kids move out. And yet there is no real protocol for counseling parents  (when they are lucky enough to find group home placement for their young adults.) I am in contact with a psychologist who counsels war vets on PTSS and has an autistic kid. Can get stuff from him
 
4. Of course the dearth of group home placements - and good ones - is a major shame of our society.
 
5.  Speech therapy gets cut drastically when kids age out, as if their communication problems are suddenly cured. Our Dan went from 3 hours a week funded by school district to a half-hour with a therapist who did not even understand the basic philosophy of PECS. So we are paying for his school speech therapist - who is terrific and well trained in any number of techniques - to do 2 hours a week. she is applying for Medicaid provider status. But that is taking a long time due to bureaucracy. And it is very costly. She is a professional and should be paid well. But still.... even she agrees the system is dreadful.

06 Vicki Martin, RN
Residential Model
Presenter

Bio: Vicki Martin, RN, is on staff at the ARCH Medical Center. She is the parent of an 11-year- old daughter with autism. Ms. Martin has used the Defeat Autism Now! approach for over 10 years and specializes in helping parents negotiate the maze of available options to choose the most effective treatments. She is certified in multiple educational interventions for spectrum disorders and is a strong advocate for all individuals with autism, especially those more severely affected. Her own daughter, who is nonverbal, recently found her "voice" by using RPM (Rapid Prompting Method), and her health is greatly improved as a result of biomedical interventions.

Abstract: For most parents of young adults with autism, the first challenge is identifying residential and vocational options.  I am researching housing options through on-site visits to a number of states on the east coast and Midwest, including 11 locations in Pennsylvania, New Jersey, Georgia, and Florida.  This presentation will focus on the pros, cons, and funding challenges of these models. Also, what new models can we envision that would meet the specialized needs of the ASD population, especially severely disabled persons with autism?

Vicki Martin, RN, is interested in discussing  these issues and finding the answers to these issues and questions:
 
Medical/nutritional needs are very important. Often those placed in residential settings receive the worst medical care and are at the mercy of the state-supported system. How do we build the team of specialists that are often needed to achieve good health and not just mask symptoms, when our children are not living at home? Who will case manage? How will parents/guardians have control over medical decisions? 
 
Funding - each state in the U.S. is so different. Some of the questions to ask when researching funding issues:  What kind of testing, IQ requirements, level of functioning, behavioral issues, are required to access funding? I had one parent tell me that the more police reports and ER visits the better to get to the top of the list and get the most money.   How can the money follow the person if housing needs to be changed?  How can parents/guardians have more control over the money? Some states require an agency to manage the money and take those dollars while the parents do all the work.  Can you buy property for your adult to live in and get state/federal money to hire staff to run the daily care services?  Can parents/guardians use state money toward a high quality residential placement and pay above what the state will provide either in money or time worked (cooperative model) so regular people can afford it and not just the rich?
 
Education and work- how can we meet the need for lifelong learning, i.e., college, skills training, therapy for sensory, communication and social challenges, brain based rehab programs that could help people achieve more independence, assistive technology access? This is one area where there will be major differences between HFA/Asperger's and those more severely affected. For those more abled, can we get together a list of colleges that offer support and compare programs and costs? The strengths of those more severely affected are so different than the programs set up in the current models that serve so called "low functioning" people with cognitive disabilities. We must create a different model for severe ASD. 
 
Other issues of great concern to me as my child is getting older:  Sexuality - how do we meet these needs appropriately and not just ignore them?  Caregiver burnout - how do we ensure that the people directly responsible for care (often the least educated and paid) know how to nurture and understand autism spectrum disorder? How can we avoid abuse of our loved ones?

07 Vicki Obee-Hilty
Residential Model
Presenter 

Bio: Vicky Obee-Hilty is Executive Director of Bittersweet Farms, in Whitehouse Ohio. In operation for more than twenty years, Bittersweet is the first United States farmstead devoted solely to the care of autistic adults. During her twenty years at Bittersweet, Obee-Hilty, who holds a master’s in Rehabilitation Counseling from Springfield College, has also served as the farm’s social worker and Program Director. As Executive Director, she has focused on finding creative ways to meet the needs of adults with autism. Most recently, she has guided Bittersweet’s expansion: increasing the farm’s training and consulting services; overseeing a 2.5 million dollar renovation project, and the development of two new sites and programs; and winning a 1.3 million dollar HUD housing grant, which will provide homes for 12 autistic adults.

Abstract:  Families have often been the innovators and creators of services that support adults with autism. When we talk about what is needed for adults with autism, we need to embrace the concept of  quality of life and well-being, building a model that can address the supports needed to provide opportunities for safety, growth and purpose.  Such systems of supports are interconnected and will promote emotional, physical, and material well-being, interpersonal relations, personal development self-determination and social inclusion.  This is way more than bricks and mortar.  This presentation will discuss critical aspects of a successful program and aims to inspire families and professionals to dream big and align with grassroots efforts to create the kind of supports that will enhance quality of life for individuals and families.

Vicki Obee-Hilty is interested in asking and answering the following questions:
What supports does the individual with ASD really need to enjoy a quality of life that is safe and meaningful?  Since autism is so unique, the answer to this is going to be individualized for each person and family.  I believe it is so important to spend time on this question as it will set the path for the journey to follow. 
 
What historically has been done to serve adults with autism that has been successful – what can be learned from families that are ahead on this journey?  Most if not all of the current excellent programs that support adults with autism were started by families.  They can be role models and have stories to tell.
 
 
Where is the money to fund adult services going to come from?  What can we be doing to advocate or mould service delivery systems now so they will be there when they are needed? Current government funding is not autism specific, so priorities and directions are dictated by a larger pool of people with intellectual disabilities whose needs are often different from those with autism.
 
How do we ensure individuals who support adults with autism are competent, empathetic and well-trained?  And, how do we make sure there is support for the support givers, be they family members or employees?
 
How do we insure that the individual with autism is understood and valued in his/her community?  (Or, how do we educate our communities so they can provide natural supports and opportunities for participation to those with autism?)
 
I find most families really want their child with autism to be safe, accepted and understood, and given the opportunity to continue to learn and grow, even after the school bus stops coming.

 08 Stephen Shore, Ed.D.
Higher Education
Presenter

Bio:   Stephen Shore, Ed.D., was diagnosed as a child with "atypical development with strong autistic tendencies," viewed as "too sick" to be treated on an outpatient basis and recommended for institutionalization. Nonverbal until four, and with much help from his parents, teachers, and others, Stephen completed his doctoral dissertation at Boston University focused on matching best practice to the needs of people on the autism spectrum. More recently, Dr. Shore accepted a professorship at Adelphi University teaching courses in special education and autism. Stephen is the author of the books Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome; Ask and Tell: Self-advocacy and Disclosure for People on the Autism Spectrum; the critically acclaimed Understanding Autism for Dummies; and the newly released DVD, Living Along the Autism Spectrum: What it Means to have Autism or Asperger Syndrome'

Dr. Shore serves on the Interagency Autism Coordinating Committee and the board of directors for the Autism Society of America, Unlocking Autism, and other autism related organizations.

Abstract: Choosing Higher Education... and Staying There  Adulthood can be difficult even for those who are not on the autism spectrum.  By examining ideas on how to meet the challenges of employment, continuing education, housing, self-advocacy, and relationships of all kinds, participants for shall gain insight for empowering person with autism they love to lead fulfilling and productive lives as contributing adults to society.

Stephen Shore is interested in asking and answering the following questions:

1.  What employment options exist for adult with autism that take advantage of their often considerable strengths while minimizing the challenges of social interaction that seems to be so crucial to employment and career success?

2.  What supports exist for persons with autism entering higher education – especially in the realms of social interaction and executive functioning?

3.  Where can I find support for adults on the autism, who with only minimal supervision, have the capacity to live interdependently in a home or apartment?

4.  How can persons on the autism spectrum be educated to develop successful advocacy skills?

5.  How can adults with autism be supported in obtaining and maintaining mutually satisfying relationships ranging from acquaintances to intimate others in a successful manner?

09 Polly Tommey:
Residential Model
Presenter

Bio: Polly Tommey is the founder of The Autism Trust, a registered charity focused on building an inspiring and sustainable future for children with autism in the UK, US, and other countries when they leave full-time education, as well as the co-founder and editor-in-chief of The Autism File magazine. Polly is regarded as one of the leading figures in autism in the UK, renowned as a campaigning and influential journalist and is featured regularly as a sector expert in the national media.

Our Children's Future

Abstract: Throughout the world there is inadequate provision of appropriate care and continuing personal development facilities for people with autism, which means many parents of children with autism face even greater challenges after school education ends. As a result, the impact on the lives and relationships of relatives and the well-being of the individual is huge. However the impact on society if we fail to address this will be even greater tomorrow. In this presentation, the need is explored and a solution - The Autism Trust - is described.

Polly Tommey is interested in asking and answering the following questions:
1. Where can an adult with autism go where they can develop further the skills they have achieved so far?

2. How do I know that the staff employed to care for my son/daughter in adulthood have their best interests at heart? Is there a qualification I should look for that is approved? Most adults with autism are very vulnerable.

3. If a place is found for my son/daughter with autism, how do I get assurance that he/she will not be taken away from there? I need somewhere where they can be for life.

4. Who will fund the support and placements needed?

5. As parents with adult children, will we be able to have some input into their wellbeing/activities/development if they are in a residential setting?