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- 3. Creating a Lasting “Family Life” The biggest concern of parents with adult children with autism is, “ What happens when I am no longer around?” (Addressing the Needs of Adults with Autism Spectrum Disorder: Recommendations for a Plan of Action for the State of NJ, 2009, p.14)
- 12. Lincoln Field: 67,594 Seats (Home of the Philadelphia Eagles!) 5/15/08 Copyright, 2008.
- 17. ASDs are “Spectrum Disorders” Asperger’s Syndrome
- 19. Quality of Life
- 34. STRIVE Mission Statement Currently in New Jersey the prevalence of autism is 1 in 94 residents, representing a ten-fold increase in just two decades. Over the past 20 years, the increased population of individuals with Autism Spectrum Disorder has been served by school districts. Now a wave of students with ASD is reaching age 21 and upon graduation will be flooding into the adult world that is not adequately prepared for them. Few existing day programs are designed to meet the unique challenges of autism, and already the Priority Wait List for residential services for the developmentally disabled in our state exceeds 5,000 adults. The need for day programs and residential services for adults with autism is urgent. Mission To create a non-profit program that utilizes best practice as a standard of care for adults with autism, (i.e. evidence-based and accountable interventions). STRIVE will include an adult day program and residential services. To provide individualized habilitation and behavioral supports for adults with autism so that they can hold jobs and achieve the greatest possible independence, and to establish a safe environment where they can live and be valued contributing members of the local community. Population to be served The program will be designed to serve those individuals with autism whose level of impairment typically prevents them from accessing less restrictive adult placements and services. This population of adults is currently underserved in the state of New Jersey. The proposed location of services is in Essex County. Currently there are no applied behavior analysis support services in this county for adults with autism who require this specialization.
- 35. (Mission Statement cont.) Funding The NJ Division of Developmental Disabilities would fund a portion this adult program. Other funding would include such sources as grants, charitable contributions by individuals and organizations, and fundraising events. Program components • Supported employment/Vocational training • Life skills and ongoing learning • Community living in residential placements Services offered Professionals who are compassionate and knowledgeable about autism, and skilled in delivering effective intervention will implement our services. Comprehensive assessments to ascertain present levels of individual performance in critical areas will inform development of individual habilitation service plans. Community-based Residential Services : Independent living services and supports will include group homes and supervised apartments: • The group homes for 4 to 6 residents will have professional, live-in “teaching parents” to develop and implement individualized goals for residents to successfully participate in family-style experiences. • The supervised apartments, in which an individual with autism lives alone or with a roommate, will have trained professionals live within the apartment complex to be available 24 hours a day. Adult Day and Vocational Services : Career development services will include vocational training, job sampling, career coaching, and paid employment. Daily activities will be designed to teach necessary skills to live and work independently. Examples include areas such as cooking, doing laundry, money management, leisure pursuits, and community participation.
- 36. Mission Statement (cont.) Other services We plan to develop university affiliations in order to serve as a clinical site for graduate-level behaviorists, therapists and teachers who are training to enter the field of autism education. Model Our intention is to follow the proven teaching models in the field of applied behavior analysis, which is best practice for adults with autism. The director of our adult program will be required to be a Board Certified Behavior Analyst (BCBA) and have a PhD in Education, Psychology or related field, and to have completed a one-year internship that includes a heavy emphasis on adult program management. Commitment We are committed to lifetime supports for adults who have autism and to serve each with respect and dignity, and to value the person.
- 46. Our GOALS: STRIVE will create an adult day program and group home that will offer individualized programming by skilled behavior analysts, in order that young adults will have needed supports to continue to live, learn, work and participate in community life in the same community where they grew up. Short-term goals: Apply to be NJ nonprofit corporation and apply for federal tax-exempt status as an IRC §501(c)(3) private foundation. Begin fundraising activities, including grassroots efforts, corporate sponsorship, government and private grants and individual giving. Complete business model. Begin branding process, develop name, logo and on-line presence. Mid-range goals: Recruit PhD level BCBA to serve as STRIVE Executive Director, who will receive training at PCDI for one year. Long-term goals: In 2013, the STRIVE day program will open and serve 3-6 young adults. The program will be individualized to meet the needs of the participants and may include supported employment, volunteer work, recreation and meaningful participation in community life. In 2015, the STRIVE group home will open and serve 2-4 young adults. The PCDI Family Focus model will be used—a community-based, family-style group home that uses teaching parents who live in the home and assume all of the responsibilities of parents, as well as the responsibilities of therapists.
- 48. We are honored that you are considering serving on the Board of Trustees for Strive Community (STRIVE). In order to assist you in your decision, we have summarized the expectations for your future leadership role . Board Member Responsibilities Trustees shall attend and actively participate in: All board meetings (four per year); Any additional meetings as scheduled by the Executive Committee; STRIVE fund raising events; Trustees are responsible for: Identifying organizational goals and ensuring that the projects are moving forward Developing each STRIVE program to its full potential Managing the finances of STRIVE Attracting donors and raising funds. Establishing committees and ensuring the committees are being run correctly Promoting STRIVE to the public. Developing relationship in order to identify and recruit prospective committee and board members, Committees Trustees assigned to a committee shall: Attend all meetings; Trustees shall sign and comply with STRIVE’s Code of Ethics.
- 49. SAMPLE: Board of Trustees : Code of Ethics Commitment to Personal Integrity I will maintain a professional attitude toward individuals served, colleagues, employees and the public at large. I will respect the views and opinions of my fellow Trustees. I will not engage in or condone any form of harassment or discrimination based on race, color, creed, age, gender, religion, nationality or disability. If I learn that a Trustee has violated ethical standards, I will bring it to the Board President’s attention. I have and will continue to accurately represent my education, training, experience and competencies. I recognize that there are times when I serve multiple roles (e.g., trustee, parent, advocate) within the autism community. During such times I will disclose all roles as appropriate and clearly state from which role I am speaking. Commitment to STRIVE’s Welfare I will not subordinate the interest of STRIVE to further my own interests. I will not disclose confidential information or use for personal reasons, any information obtained in the course of service to STRIVE. My only use of such information will be for STRIVE business. I will not engage staff in requests or business, other than the activity of my committee(s).
- 50. SAMPLE: Conflict of Interest BOARD MEMBERS, COMMITTEE MEMBERS AND STAFF Policy: It is the policy of Strive Community (STRIVE) to assure the integrity of services provided by establishing standards to prevent and/or correct any matters which create or have the potential of creating a conflict of interest between a Board Member, committee member or staff member and STRIVE. Purpose: STRIVE recognizes that to fulfill the organization’s responsibilities to the individuals served, it is dependent upon the continuing leadership of qualified Board Members, committee members and staff. One aspect of determining qualifications is avoidance of conflicts of interest between a Board Member, committee member or staff member and STRIVE. Procedures: STRIVE expects all Board Members, committee members and staff to be constantly aware of the dangers inherent in situations that give rise to conflicts of personal interest or the perception of conflicts of personal interest. Although complete avoidance of all conflicts of interest is not always possible, STRIVE expects the loyalty and ethical consciousness that will motivate an individual to recognize situations and circumstances that could produce a conflict of interest or potential perception of a conflict of interest.
- 53. SAMPLE- Professional Advisory Board Member Responsibilities and Commitment Statement We are honored that you are considering serving on the Professional Advisory Board for STRIVE Community. We have summarized below the expectations for your future role . Professional Advisory Board Member Responsibilities: I will attend and actively participate in Professional Advisory Board meetings. I will be available for informal consultations. I am responsible for contributing my expertise to assist in the current and future work of STRIVE. I will allow STRIVE to publish my name as a member of the Professional Advisory Board. Code of Ethics I will respect the views and opinions of fellow Board Members. I will accurately represent my education, training, experience and competencies. I will not disclose confidential information or use for personal reasons, any information obtained in the course of service to STRIVE. My only use of such information will be for STRIVE business. Commitment Statement I support the STRIVE mission of providing scientifically based ABA programming to adults with autism through a day program and living arrangements. I am committed to the growth and success of STRIVE and agree to contribute my professional expertise in order to assist STRIVE in reaching these goals. My signature does not imply endorsement of any or all of the recommendations developed by the STRIVE Professional Advisory Board. __________________________________ _________________ Signature Date
- 57. 8. Legal Requirements NJ Nonprofit Corporation
- 59. BY-LAWS OF STRIVE COMMUNITY (STRIVE), INC., A NJ NONPROFIT CORPORATION ARTICLE 1 – GENERAL Section 1. Name The name by which the corporation is to be known shall be “STRIVE COMMUNITY (STRIVE), INC., A NJ Nonprofit Corporation,” (hereinafter “STRIVE” or the "Corporation"). Section 2. Purpose This Corporation is a nonprofit corporation organized and operated not for pecuniary profit. Its purpose shall be: To establish a special needs adult training program serving adults who have an autistic spectrum disorder; To use scientific, data-based, and accountable interventions to provide individualized training to individuals who have an autistic spectrum disorder, so that individuals may pursue a meaningful and productive life and achieve inclusion in society through relationships, recreation and work consistent with the unique abilities and strengths of the individual; To qualify as a non-profit corporation under New Jersey law and tax-exempt organization under Federal law; and such other and further purposes as the Board of Trustees shall determine. Section 3. Charitable Purpose SAMPLE:
- 60. SAMPLE: Our Success Indicators: Our success indicators — Connecting with Autism: A Blueprint for Lifetime Support Autism New Jersey, the state’s oldest and largest advocacy organization for individuals with autism, recently released the results of a landmark review of more than 500 interviews to determine the best ways that the needs of individuals with autism, their families and professionals who support them would be better served in New Jersey. The report, Connecting with Autism: A Blueprint for Lifetime Support, lists the following among its success indicators for the goal of expanding adult services: A. All adults with autism have access to high-quality residential, employment and day service options and participate in the amount of intervention necessary to maximize their functional abilities, meaningful relationships and employability. B. Vocational and daily activities match interests and abilities. C. Adults with autism make a substantial contribution to society. D. All personnel who work with adults with autism utilize evidence-based interventions and regularly evaluate the effectiveness of these interventions. Strive Community shares these success indicators, which will be evident in our day program, group home and will be advanced in our blueprint to assist others in replicating our model.
- 61. Innovative Housing Option for Young Adults with Autism From Lisa Jo Rudy, About.com Guide May 17, 2010 http://autism.about.com/b/2010/05/17/innovative-housing-option-for-young-adults-with-autism.htm The Supportive Housing Association of NJ http://www.shanj.org/about.html Searching for Services for Adult Autistic Children By Bev McCarron, October 29 in Healthcare http://www.njspotlight.com/stories/10/1028/2250/ Locals Prepare for ‘Tsunami’ of Adults with Autism 10.02.2011, Aba Autism , by admin . http://www.autism9.com/locals-prepare-for-tsunami-of-adults-with-autism.html
- 62. (Addressing the Needs of Adults with Autism Spectrum Disorder: Recommendations for a Plan of Action for the State of NJ, 2009. DHS Office of Publications 10/2009 PCDI
- 64. Special Thanks to: Tracy Gencarelli Mary Howley Therese Ojibway
Notas del editor
- That means ASDs affect each person in different ways, and can range from very mild to severe. People with ASDs share some similar symptoms, such as problems with social interaction. But there are differences in when the symptoms start, how severe they are, and the exact nature of the symptoms. Target: Primarily Individuals with Servere Autism
- Improved the quality of life of the adults
- Data-based Analytical Able to be Replicated Socially Important (Adaptive Behavior) Contextual Accountable Data-based Analytical Able to be Replicated Socially Important (Adaptive Behavior) Contextual Accountable
- – from simple ones such as learning to wave or clap hands, to complex skills such as having a conversation–Each step is taught by giving learnerren the opportunity to practice over and over again until the individual masters the skill and can use it in everyday life. Therapists identify activities that the learner really likes and uses these activities to motivate the learner during the teaching interactions ( positive reinforcement ). Situations are set up to encourage the learner to want to participate in learning. For example, favorite toys are available and when the learner shows an interest in the toy, the therapist presents a learning opportunity by asking the learner to point to the item or to use words to ask for it. Rewards are also known as “ reinforcers ,” and can include everything from snacks, to hugs, to spins in the air, to playing with a preferred toy. Parents are actively involved in choosing the reinforcers that are just right for their learner. When a learner first learns something new, the therapist provides rewards, praise, and encouragement simply for trying. This motivates the learner and makes learning fun.
- This often involves the therapist using her hands to guide the learner, or giving examples of what the learner should do or say ( prompting ). Gradually, as the learner begins to learn the skill, the therapist reduces her help, until ultimately the learner can do it successfully all by himself. ABA therapy focuses on creating many practice opportunities during teaching sessions and throughout the individual’s day so that he can become a “pro” at the new skill. A cornerstone of ABA is that all interventions are assessed and recorded to be sure it’s working. Behavior analysts believe there isn’t a minute to waste and they want to be sure an intervention is effective. If not, it’s modified or changed to encourage success. You can accurately assess individual progress. With ABA there’s no need to wonder if it’s working — the data are your proof. 3) This is the most important step to making sure the skill is really learned. ABA focuses on a generalization of skills at every phase of the learning process. Skills are taught using a variety of materials, different teachers, and in different settings. This generalization strengthens and expands on learning so it is useful in the real world. 4) Parents are an essential part of an ABA treatment program. Parents and caregivers are taught how to teach important skills and how to manage behavior both at home and in the community. With an ABA program you will be empowered to teach your learner and to address his challenging behavior. 5) ABA methods can also reduce those behaviors that interfere with learning (e.g. self-injury or repetitive stimulatory behavior). In ABA-based therapy, therapists, caregivers and parents work together to identify challenging behaviors, assess them to determine why a learner is behaving that way and develop structured plans to reduce the behavior. Often, a problem behavior is caused by a lack of a specific skill such as communication. ABA works toward identifying ways to replace challenging behavior with more adaptive skills such as using language to communicate.
- Completed an interview process that resulted in 7 founding families that accepted responsibility to ensure the success of Strive Community
- Princeton Child Development Institute, an internationally recognized ABA program that has pioneered intervention models for the benefit of persons with autism.
- Ov erview of Teaching Family Model: Treatment Practices: Utilizes research & well-evaluated clinical practice Staff Selection and Training Direct care providers, practitioners, are carefully selected based on their ability to provide individualized treatment in a positive, affirming manner. New practitioners experience a year-long training process, beginning with a pre-service workshop and continuing with a variety of in-service training opportunities. On-Going Support Support staff follow the professional feedback model on: Treatment planning and implementation For development of clinical skills Systematic Evaluation Trained evaluators regularly observe and rate treatment skills of each staff person and solicit the opinions of parents, dependent adults, and other stakeholders regarding the processes and benefits to the dependent adults Supportive Administration Administrators and support staff keep pace and change organizational policies and practices to fit the current needs of individuals and society while simultaneously protecting the integrity of the Model. Research and Evaluation The developers and implementers of the Teaching-Family Model have conducted over 200 studies to learn and validate what treatment approaches and practices work. This research and evaluation has kept the Model focused on benefiting children, families, dependent adults, and society. Quality Assurance Member agencies must undergo a review and re-certification process annually Initial and triennial reviews consist of: On-site visit by two or more peer reviewers to observe and review the documentation of treatment and benefits to review program support systems Interview staff and consumers Agency consumer evaluation is also conducted: Referral and funding agents, board members, and individuals in the program are asked to rate and provide comments about the treatment programs Annual review: Examines documentation & conducts a practitioner consumer evaluation
- Recruit Board Members Under NJ law, corporations must have at least one director. Directors must be at least 18 years of age. They do not need to be NJ residents, unless required by the certificate incorporation or by laws. The initial board of trustees assumes much of the responsibility in starting a new nonprofit. They will determine the direction and goals of the organization and set precedents for future board members. They approve the original bylaws, do the initial fundraising and hire staff as the organization takes shape. The initial all-volunteer period can prove to be very challenging for new organizations. That’s why it’s crucial to recruit a board with not only a passion for the cause, but with a proven track record of accomplishment. It’s a good idea to have an attorney on the board who can assist with not only the organzation of the nonprofit and application for federal tax-exempt status, but continuing reporting requirements. Also a good idea to have an accountant on the board to act as treasurer. We assembled a Board of Trustees, which included community members and parents who are leaders in business, law, education, nonprofit entities and disability organizations.
- Assembled a Professional Advisory Board of top experts in the field of applied behavior analysis, medicine and disability issues.
- Business Plan An operating budget outlines planned revenue and expenses, broken down by category. Categories include: personnel (salaries and benefits), administrative (computer equipment and office supplies), and fundraising (marketing and soliticing donations). Once incorporated, the board of trustees has to authorize the annual budget. Having a budget is important, not only to set fundraising goals, but a budget typically needs to be incorporated in any grant application.
- Certificate of Incorporation The filing fee is $125. NJ Division of Revenue website has a simple, fill-in-the blank form with instructions. Form can be mailed or filed online. The Certificate of Incorporation in NJ must have the number of the first board and the names and addresses of board members.
- By-Laws There is no set criteria for the content of by-laws. By-laws typically set forth internal rules and procedures for the corporation, touching on issues like the existence and responsibilities of corporate offices, the size of the board of directors and the manner and term of their election, how and when board and shareholder meetings will be held, who may call meetings, and how the board of directors will function. By-laws must be included in application for tax-exempt status with IRS.