Advocacy Testimony and Statements

Linda Walder Fiddle Testifies Before NJ Assembly Health and Senior Services Committee on November 23, 2009
Read the Testimony:

Linda Walder Fiddle, Esq.

Founder and Executive Director of The Daniel Jordan Fiddle Foundation

Member of the NJ Adults with Autism Task Force

Monday, November 23, 2009

TESTIMONY

Assembly Health and Senior Services Committee

Bill A 4225

Good morning distinguished legislators. I am here this morning as the appointee of

Speaker Joseph Roberts to the NJ Adults with Autism Task Force, and the Founder and Director of The Daniel Jordan Fiddle Foundation, a 501(c) (3), national autism organization with the mission to develop, advocate for and support programs and services for adults with Autism Spectrum Disorders (ASD) through grant awards.

I am proud to let you know that our organization and I are being recognized in the December issue of REDBOOK magazine as one of five recipients in the United States of their Strength and Spirit Award for our efforts on behalf of teens and adults with ASD here in New Jersey and throughout the United States. Surely those who read this article from across the country will note that I cited our Governor and the work of the NJ Adults with Autism Task Force for their recognition of the need to address the issues that currently impact adults on the spectrum and will certainly continue to impact even more individuals as they age to adulthood.

Speaker Roberts has been, in my view, a rare and extraordinary leader in advocating for and accomplishing governmental support for the 1 in 90 individuals affected by ASD in our State. His leadership will truly be missed but I am hopeful that his example will continue to inspire each of you to create the legislative measures that will offer practical and implementable steps towards community support and integration of adults on the spectrum.

Page 2

Linda Walder Fiddle

Bill A 4225

Bill A 4225 sponsored and proposed by Speaker Roberts calls for the inclusion of adults with ASD in the Autism Registry. Adults, as you know would be able to self-register or a health care provider. It is also important that the privacy rights of registrants are secured.

Amend the Autism Registry legislation to include registering adults with ASD on an

opt-in basis. A total of $500,000 has been provided to the state Department of Health

and Senior Services for an Autism Registry, for the reporting of diagnoses of autism.

These funds will enhance the knowledge and understanding of ASD: both to plan

better and provide for services to children and adults with ASD, and to analyze

contributing factors to the cause of the increase in ASD. Adults with ASD can register

themselves, or can be registered by health care and service providers. (Quoting Report of the NJ Adults with Autism Task Force).

It is my view that we must have more concrete information about the numbers of

adults who are currently not registered with our State because they did know they could register, did not have a diagnosis until recently, or did not feel that their privacy rights would be secure if they chose to register. We must know these numbers so that we can provide services to adults and project the costs for doing so. The inclusion of the adults in the registry will give us a clearer picture and enable us to better serve this population. In addition, and importantly, it is our goal to remove the stigma of ASD by providing a secure way for adults to claim the diagnosis without being penalized or belittled because of it. Rather, they can proudly include themselves as a person facing this challenge and thereby enhance to level of services and supports that will create more opportunities for them to participate in and contribute to community life.

Although I will not be officially testifying on behalf of Bill 4226 that calls for the “Law Against Discrimination” to be

amended to include persons with Autism Spectrum Disorders and other developmental disabilities, I fully support the enactment of this legislation.

Below are some samples of advocacy testimony and public statements presented on behalf of The Daniel Jordan Fiddle Foundation regarding adult issues.

RELEASE OF THE NJ ADULTS WITH AUTISM TASK FORCE REPORT ON OCTOBER 8, 2009
Linda Walder Fiddle was the Appointee of Assembly Speaker Joseph J. Roberts, Jr.
Click on this link to watch video:

http://www.nbc40.net/pages/videoplayer/video.php?vid=10835

and read the press release: http://www.bbbehavior.com/?p=478

Monday, February 25, 2008
Testimony of Linda Walder Fiddle, Esq.
Founder and Executive of The Daniel Jordan Fiddle Foundation
Appointee, The New Jersey Adults with Autism Task Force
Member, The Board of Trustees of COSAC
info@djfiddlefoundation.org
201-444-4141

New Jersey State Assembly
Health and Senior Services Committee
Re: HS 150, SR 068
“Self-Directed Support Service for Persons with Developmental Disabilities Rights Act”
Assembly Speaker Joseph J. Roberts, Jr.

TESTIMONY:

Good morning to the Honorable Speaker of the New Jersey State Assembly, Joseph J. Roberts, Jr., The Honorable Chairman of the New Jersey State Assembly’s Health and Senior Services Committee, Herb Conaway and honorable committee members as well as all of those citizens and professionals in attendance concerned with issues relating to individuals with Autism and their families. My name is Linda Walder Fiddle and I am the Founder and Executive Director of The Daniel Jordan Fiddle Foundation located in Ridgewood, New Jersey. The Daniel Jordan Fiddle Foundation has been awarding grants nationwide since 2002 to residential, recreational, vocational, educational and family programs that enrich the lives of adolescents and adults with Autism. (See attached press release announcing our 2008 grantees and visit our website (http://www.djfiddlefoundation.org/). Our expertise encompasses developing, identifying, supporting and supervising exemplary programs that honor the individuality of each person with Autism throughout their life. We are the first and only organization in the United States with this particular focus, to my knowledge. I am greatly honored to be Speaker Roberts’ appointee to The New Jersey Adults with Autism Task Force and I look forward to working with my fellow committee members, once their appointments have been made, to study, evaluate and make recommendations relating to specific actionable measures to support the needs of adults with Autism who are residents of New Jersey, including, but not limited to, job training and placement, housing and long-term care.

As a professional in this field, as well as being a concerned citizen, I commend Speaker Roberts on the extraordinary leadership role he has taken in the past and continues to take with regard to one of the greatest health challenges affecting our State in its history, currently impacting at least 1 in 94 of our children, not to mention the affect this has on the health, social and economic well-being of the community at large. Speaker Roberts is a visionary in his understanding of the significant role this State must play to address what quickly is becoming a crisis in terms of the availability of programs and services that provide individuals with Autism the right to live, work and recreate throughout their adult lives in a variety of settings that offer suitable, stimulating and sustainable opportunities for them to do so.

The legislation presented to you today is a significant step forward in addressing the needs of those with Autism and their families. There have been questions raised as to why such a specific focus is being placed on those with Autism when there are many other challenges affecting the developmental disabilities population. My response, with all due respect and compassion for the individuals and their families facing these challenges, is that the numbers of individuals diagnosed with Autism in this State mandate our specific and directed attention.

One of the most urgent, if not the most urgent, challenge individuals with Autism and their families face in this State is finding appropriate living accommodations in adulthood. As you know, the waiting list for housing is decades long for some, and years long for many, and this is totally unacceptable and indeed unconscionable. Not only are the children with Autism aging into adulthood but their parents and caregivers who have spent a lifetime nurturing them are aging, becoming senior citizens, with their own health issues that impact their abilities to provide the adequate care their adult child requires. It is not a choice. We must reduce the swelling ranks of individuals in need of housing.

The Bill before you, designated the “Self-Directed Support Services for Persons with Developmental Disabilities Rights Act,” is an excellent step in ameliorating the current waiting list crisis in adult housing. I especially draw your attention to Bill’s statement that requires the design of services to maximize the developmental potential of persons with a full recognition and respect for their dignity, individuality and legal rights. In my view regarding this point, we must:

Enact safeguards that will ensure that the self-directed housing requested by a guardian or caregiver is in the best interest of the individual. Self-directed housing should not become an opportunity for those vested with the responsibility to make decisions and care for an individual with Autism or other developmental challenge to get more money into the household at the expense of creating the best opportunity for that individual to live and participate in community life as fully as possible.
Require the Individualized Habitation Plan (IHP) to address the specific needs of the individual involved on the Autism spectrum. For instance, every adult with Autism requires a different level of staff supervision based upon the spectrum nature of this disorder, and we must assure that the housing accommodation addresses in detail the specific needs of said individual to assure their safety and well being in the community.
Require specific and on-going medical and behavioral training for those vested with the responsibility to care for the individual receiving self-directed housing services. This would include parents and caregivers when it is determined that the home setting is the best placement for that individual. This training could be provided by Autism Centers of Excellence throughout the State as well as schools and programs versed in the needs of adults with Autism.
Include a paragraph in the legislation that specifically states that the goal for each individual receiving self-directed housing services is to provide housing in the least restrictive setting for that individual. We currently do this by law in terms of education and I believe we should mandate this by law for adults with Autism and other developmental challenges so as to assure that there is maximum integration in community life for each individual.

Finally, I would like to add my support of the other legislation before you today including the requirement to create an identification card for each individual with Autism, the creation of a New Jersey Autism Website (which can be linked to The Daniel Jordan Fiddle Foundation website that contains two sections of helpful links for individuals, caregivers, professional and those in the community at large), and the student mentor program. The Daniel Jordan Fiddle Foundation has piloted such a program with VSA arts of New Jersey and students from Edison High School that can be referenced in support of this legislation.

Although, I fully support the creation of the Office of the Advocate for Persons with Autism (OAPA) it is imperative as mentioned in the legislation that the OAPA works closely with Division of Developmental Disabilities in the Department of Human Services and I would suggest the requirement of bi-monthly meetings to assure continuity between the agencies. It would be quite beneficial for the new OAPA office to report to the legislature on its work after one year of operations. In addition, it is vital that information about this newly established Office be disseminated to families through schools, doctor’s offices and programs relating to individuals with Autism.

Thank you for the opportunity to testify before you today and to serve the State of New Jersey as a volunteer advocate for individuals with Autism and their families.

Respectfully Submitted By:
Linda Walder Fiddle, Esq.
February 25, 2008

Read testimony on:

New Jersey State Senate
Health, Human Services and Senior Citizens Committee
Re: Bill S-2559

May 21, 2007
Click here


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Founder and Executive Director of The Daniel Jordan Fiddle Foundation Member of the NJ Adults with Autism Task Force Monday, November 23, 2009 TESTIMONY Assembly Health and Senior Services Committee Bill A 4225 Good morning distinguished legislators. I am here this morning as the appointee of Speaker Joseph Roberts to the NJ Adults with Autism Task Force, and the Founder and Director of The Daniel Jordan Fiddle Foundation, a 501(c) (3), national autism organization with the mission to develop, advocate for and support programs and services for adults with Autism Spectrum Disorders (ASD) through grant awards. I am proud to let you know that our organization and I are being recognized in the December issue of REDBOOK magazine as one of five recipients in the United States of their Strength and Spirit Award for our efforts on behalf of teens and adults with ASD here in New Jersey and throughout the United States. Surely those who read this article from across the country will note that I cited our Governor and the work of the NJ Adults with Autism Task Force for their recognition of the need to address the issues that currently impact adults on the spectrum and will certainly continue to impact even more individuals as they age to adulthood. Speaker Roberts has been, in my view, a rare and extraordinary leader in advocating for and accomplishing governmental support for the 1 in 90 individuals affected by ASD in our State. His leadership will truly be missed but I am hopeful that his example will continue to inspire each of you to create the legislative measures that will offer practical and implementable steps towards community support and integration of adults on the spectrum. Page 2 Linda Walder Fiddle Bill A 4225 Bill A 4225 sponsored and proposed by Speaker Roberts calls for the inclusion of adults with ASD in the Autism Registry. Adults, as you know would be able to self-register or a health care provider. It is also important that the privacy rights of registrants are secured. Amend the Autism Registry legislation to include registering adults with ASD on an opt-in basis. A total of $500,000 has been provided to the state Department of Health and Senior Services for an Autism Registry, for the reporting of diagnoses of autism. These funds will enhance the knowledge and understanding of ASD: both to plan better and provide for services to children and adults with ASD, and to analyze contributing factors to the cause of the increase in ASD. Adults with ASD can register themselves, or can be registered by health care and service providers. (Quoting Report of the NJ Adults with Autism Task Force). It is my view that we must have more concrete information about the numbers of adults who are currently not registered with our State because they did know they could register, did not have a diagnosis until recently, or did not feel that their privacy rights would be secure if they chose to register. We must know these numbers so that we can provide services to adults and project the costs for doing so. The inclusion of the adults in the registry will give us a clearer picture and enable us to better serve this population. In addition, and importantly, it is our goal to remove the stigma of ASD by providing a secure way for adults to claim the diagnosis without being penalized or belittled because of it. Rather, they can proudly include themselves as a person facing this challenge and thereby enhance to level of services and supports that will create more opportunities for them to participate in and contribute to community life. Although I will not be officially testifying on behalf of Bill 4226 that calls for the “Law Against Discrimination” to be amended to include persons with Autism Spectrum Disorders and other developmental disabilities, I fully support the enactment of this legislation. Below are some samples of advocacy testimony and public statements presented on behalf of The Daniel Jordan Fiddle Foundation regarding adult issues. RELEASE OF THE NJ ADULTS WITH AUTISM TASK FORCE REPORT ON OCTOBER 8, 2009 Linda Walder Fiddle was the Appointee of Assembly Speaker Joseph J. Roberts, Jr. Click on this link to watch video: http://www.nbc40.net/pages/videoplayer/video.php?vid=10835 and read the press release: http://www.bbbehavior.com/?p=478 Monday, February 25, 2008 Testimony of Linda Walder Fiddle, Esq. Founder and Executive of The Daniel Jordan Fiddle Foundation Appointee, The New Jersey Adults with Autism Task Force Member, The Board of Trustees of COSAC info@djfiddlefoundation.org 201-444-4141 New Jersey State Assembly Health and Senior Services Committee Re: HS 150, SR 068 “Self-Directed Support Service for Persons with Developmental Disabilities Rights Act” Assembly Speaker Joseph J. Roberts, Jr. TESTIMONY: Good morning to the Honorable Speaker of the New Jersey State Assembly, Joseph J. Roberts, Jr., The Honorable Chairman of the New Jersey State Assembly’s Health and Senior Services Committee, Herb Conaway and honorable committee members as well as all of those citizens and professionals in attendance concerned with issues relating to individuals with Autism and their families. My name is Linda Walder Fiddle and I am the Founder and Executive Director of The Daniel Jordan Fiddle Foundation located in Ridgewood, New Jersey. The Daniel Jordan Fiddle Foundation has been awarding grants nationwide since 2002 to residential, recreational, vocational, educational and family programs that enrich the lives of adolescents and adults with Autism. (See attached press release announcing our 2008 grantees and visit our website (http://www.djfiddlefoundation.org/). Our expertise encompasses developing, identifying, supporting and supervising exemplary programs that honor the individuality of each person with Autism throughout their life. We are the first and only organization in the United States with this particular focus, to my knowledge. I am greatly honored to be Speaker Roberts’ appointee to The New Jersey Adults with Autism Task Force and I look forward to working with my fellow committee members, once their appointments have been made, to study, evaluate and make recommendations relating to specific actionable measures to support the needs of adults with Autism who are residents of New Jersey, including, but not limited to, job training and placement, housing and long-term care. As a professional in this field, as well as being a concerned citizen, I commend Speaker Roberts on the extraordinary leadership role he has taken in the past and continues to take with regard to one of the greatest health challenges affecting our State in its history, currently impacting at least 1 in 94 of our children, not to mention the affect this has on the health, social and economic well-being of the community at large. Speaker Roberts is a visionary in his understanding of the significant role this State must play to address what quickly is becoming a crisis in terms of the availability of programs and services that provide individuals with Autism the right to live, work and recreate throughout their adult lives in a variety of settings that offer suitable, stimulating and sustainable opportunities for them to do so. The legislation presented to you today is a significant step forward in addressing the needs of those with Autism and their families. There have been questions raised as to why such a specific focus is being placed on those with Autism when there are many other challenges affecting the developmental disabilities population. My response, with all due respect and compassion for the individuals and their families facing these challenges, is that the numbers of individuals diagnosed with Autism in this State mandate our specific and directed attention. One of the most urgent, if not the most urgent, challenge individuals with Autism and their families face in this State is finding appropriate living accommodations in adulthood. As you know, the waiting list for housing is decades long for some, and years long for many, and this is totally unacceptable and indeed unconscionable. Not only are the children with Autism aging into adulthood but their parents and caregivers who have spent a lifetime nurturing them are aging, becoming senior citizens, with their own health issues that impact their abilities to provide the adequate care their adult child requires. It is not a choice. We must reduce the swelling ranks of individuals in need of housing. The Bill before you, designated the “Self-Directed Support Services for Persons with Developmental Disabilities Rights Act,” is an excellent step in ameliorating the current waiting list crisis in adult housing. I especially draw your attention to Bill’s statement that requires the design of services to maximize the developmental potential of persons with a full recognition and respect for their dignity, individuality and legal rights. In my view regarding this point, we must: Enact safeguards that will ensure that the self-directed housing requested by a guardian or caregiver is in the best interest of the individual. Self-directed housing should not become an opportunity for those vested with the responsibility to make decisions and care for an individual with Autism or other developmental challenge to get more money into the household at the expense of creating the best opportunity for that individual to live and participate in community life as fully as possible. Require the Individualized Habitation Plan (IHP) to address the specific needs of the individual involved on the Autism spectrum. For instance, every adult with Autism requires a different level of staff supervision based upon the spectrum nature of this disorder, and we must assure that the housing accommodation addresses in detail the specific needs of said individual to assure their safety and well being in the community. Require specific and on-going medical and behavioral training for those vested with the responsibility to care for the individual receiving self-directed housing services. This would include parents and caregivers when it is determined that the home setting is the best placement for that individual. This training could be provided by Autism Centers of Excellence throughout the State as well as schools and programs versed in the needs of adults with Autism. Include a paragraph in the legislation that specifically states that the goal for each individual receiving self-directed housing services is to provide housing in the least restrictive setting for that individual. We currently do this by law in terms of education and I believe we should mandate this by law for adults with Autism and other developmental challenges so as to assure that there is maximum integration in community life for each individual. Finally, I would like to add my support of the other legislation before you today including the requirement to create an identification card for each individual with Autism, the creation of a New Jersey Autism Website (which can be linked to The Daniel Jordan Fiddle Foundation website that contains two sections of helpful links for individuals, caregivers, professional and those in the community at large), and the student mentor program. The Daniel Jordan Fiddle Foundation has piloted such a program with VSA arts of New Jersey and students from Edison High School that can be referenced in support of this legislation. Although, I fully support the creation of the Office of the Advocate for Persons with Autism (OAPA) it is imperative as mentioned in the legislation that the OAPA works closely with Division of Developmental Disabilities in the Department of Human Services and I would suggest the requirement of bi-monthly meetings to assure continuity between the agencies. It would be quite beneficial for the new OAPA office to report to the legislature on its work after one year of operations. In addition, it is vital that information about this newly established Office be disseminated to families through schools, doctor’s offices and programs relating to individuals with Autism. Thank you for the opportunity to testify before you today and to serve the State of New Jersey as a volunteer advocate for individuals with Autism and their families. Respectfully Submitted By: Linda Walder Fiddle, Esq. February 25, 2008 Read testimony on: New Jersey State Senate Health, Human Services and Senior Citizens Committee Re: Bill S-2559 May 21, 2007 Click here Home . The DJF Mission . Grants/Program Development . Support Our Mission . Events . Media/Advocacy . Community Resources . Contact Us Copyright © 2010 The Daniel Jordan Fiddle Foundation. All Rights Reserved. A NJAccess web site