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The service system for adults with autism who require specialized programs is in crisis. If parents haven't planned well, it may be very hard to find the right living situation for their adult child with autism. Strive Community started as a shared concern of seven families who recognized the lack of day programs and housing for adults with autism in Essex County. With their children with autism rapidly approaching adulthood, they took matters into their own hands to create an adult program that utilizes the principles of applied behavior analysis.
This workshop will provide information on how parents and community members can be proactive versus reactive to the severe shortage of adult services. An overview of Strive Community’s plan of action and suggested models to follow in the initial planning stages of creating an adult ABA program will be discussed.
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)
ABA is widely recognized as the single most effective treatment for learners with Autism Spectrum Disorder and the only treatment shown to lead to substantial, lasting improvements in the lives of individuals with autism.
ABA-based treatment strategies maximize the learning potential of persons with ASD, and are flexible, individualized and dynamic.
Please list in order of priority, what services are you looking for:
(Group home, adult day program, supported employment, etc.)
Please be specific and list all of the services desired (e.g. are you looking for medical component, certain therapy, etc.):
Monitoring: Discuss whether your son or daughter needs someone to monitor or help with the following items: self-care skills (personal hygiene, dressing), domestic activities (cooking, shopping, laundry, cleaning), transportation, reinforcement of social and interpersonal activities with others to develop social skills, and list other areas pertinent. What is the ratio of support needed?
Current School/Day Program or Work: describe current status and or future goals.
Please list past programs or schools your son/daughter has participated in:
Please list what is your level of commitment to Applied Behavior Analysis?
Do you currently utilize other therapies, besides ABA? Please explain
Have you utilized other therapies besides ABA in the past? Please explain
What are your thoughts regarding the Family Teaching Model?
What program(s) have you seen in the past that you like? Please explain why.
Future: Describe any plans that have been made for your son/daughter’s future living situation. Describe your idea of the best living arrangement for your son/daughter at various ages or stages. For each age/stage, which living arrangements would you prefer? Example: a relatives home, supported living in an apartment, a group home, parent-owned housing with supervision etc.
Community: List the types of places that would need to be conveniently reached from your child’s home.
A Founding Parent is the parent of a child/adult who supports the vision and mission of the adult program and who is dedicated to supporting the program through contributions of time, energy, and financial support in the years leading up to and during their child’s enrollment in the program.
___ I am interested in becoming a founding parent.
____ I am not interested in becoming a founding parent at this time; however, I would like to be placed on your mailing list for future events and news updates.
____ I am not interested in becoming a founding parent.
SAMPLE: FOUNDING PARENT GROUP RIGHTS AND RESPONSIBILITIES
As a member of the Founding Parent Group:
You have the right to a placement for your adult child at programs.
As a member of the STRIVE Founding Parent Group:
You have the responsibility to promote STRIVE and ensure its success.
You have the responsibility to attend at least 80% of all STRIVE Founding Parent Group meetings.
You have the responsibility to attend all STRIVE Board meetings for which Parent Group attendance is necessary.
You have the responsibility to attend all STRIVE fundraising events.
You have the responsibility to participate in the preparation and execution of all major STRIVE fundraisers.
You have the responsibility to chair or co-chair at least one major annual event, or in the alternative, be instrumental in accomplishing a major STRIVE goal (i.e., complete essential STRIVE paperwork, recruit a director, secure a location, bring in at least $50,000 through connections and/or individual fundraising).
You have the responsibility to bring at least 20 participants to all major STRIVE fundraisers, except for golf tournaments, for which you need to bring 4 participants.
You have the responsibility to contribute items to be raffled at STRIVE events.
You have the responsibility to seek out smaller fundraising opportunities and exposure for STRIVE, and to contribute at least one such idea annually.
You have the responsibility to diligently work to complete STRIVE-related tasks you have agreed to complete in an efficient and timely manner.
Your commitment to STRIVE, as outlined above, is ongoing and will continue after the program is put into place.
FAILURE TO COMPLY WITH RESPONSIBILITIES:
Any Founding Parent who repeatedly fails to substantially comply with the responsibilities may be subject to removal from the Founding Parent Group and loss of the rights of a Founding Parent.
RESOLVING FOUNDING PARENT GROUP DISPUTES:
Any disagreement among Founding Parents including a decision to remove a Founding Parent from the Founding Parent Group and addressing concerns over the sufficiency of any member’s contribution and commitment to STRIVE, will be resolved by an independent panel of three individuals that will be comprised of one member of the Founding Parent Group and two members from either the Board of Trustees of STRIVE or Officers of STRIVE who are not also Founding Parents. The independent panel will make all decisions by majority vote. All decisions made by the independent panel will be final and not subject to appeal.
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.
(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.
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.
Weekend training assistants, to help “Teaching Parents”.
Field workers gaining supervised experience for BCBA certification.
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.
-Agree to Board Member Responsibilities, Code of Ethics, and Conflict of Interest Policy.
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.
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).
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.
A Board/committee member or staff shall be considered to have a conflict of interest if:
He or she has existing or potential financial or other interests that impairs, or might reasonably appear to impair, his or her independent, unbiased judgment in the discharge of his or her responsibilities (hereinafter a “conflict of interest”) to STRIVE.
He or she is aware that a member of his or her family or his or her business associate, significant other, domestic partner, employer or employee has a direct, indirect, existing or potential conflict of interest.
He or she is aware that any organization of which he or she is an officer, director, employee, member, partner, trustee, or a significant stockholder has an existing or potential conflict of interest.
A Board/committee member or staff shall comply with the following guidelines in cases where a real or a potential conflict of interest exists:
He or she shall disclose to the Board of Directors any potential conflict of interest at the earliest practical time.
He or she shall not deliberate, vote on or recommend for action any matter before the Board for consideration if it is a matter in which he or she or his or her related parties have a conflict of interest or potential conflict of interest.
If he or she is uncertain whether a conflict of interest or potential conflict of interest exists in any matter he or she may request the Board to resolve the question by majority vote.
In any matter before the Board where he or she has a conflict of interest or potential conflict of interest, he or she shall absent him or herself from the room where deliberations are taking place and, in the case where a vote is taken, his or her vote shall be recorded as an abstention.
I have been provided a copy of STRIVE’s Conflict of Interest Policy and I understand .
-Commitment to Board Member Responsibilities and Code of Ethics.
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
1. File Certificate of Incorporation for nonprofit corporation with New Jersey Department of Treasury, Division of Revenue
a. names entity, location and purpose
b. IRS and State require specific language
c. needs to be filed before first board meeting and before apply for exempt status from IRS
2. File Form SS-4 with the IRS (Employer ID number/www.irs.gov)
a. required to open bank account
3. Prepare by-laws (to be adopted at organizational meeting of Board of Trustees)
a. outlines rules of organizations such as:
(i) existence and responsibilities of corporate officers,
(ii) size of the board of directors and the manner and term of their election,
(iii) how and when board and shareholder meetings will be held, who may call meetings
b. may be amended as needed by Board of Trustees
4. Hold initial board meeting
a. approve by-laws
b. elect officers
c. appoint committees
d. minutes recorded/corporate record book
5. File Application for Recognition of Exemption (Form 1023) with IRS
Legal Requirements NJ Nonprofit Corporation
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:
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.
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
(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