Hello,
Below is the public announcement on the New Jersey Autism Registry and the Public Comment Period. ASAN has been asked to submit our thoughts on this to the New Jersey Department of Human Services, where we do have some pre-existing relationships that will make for meaningful consideration of our point of view. This is a real opportunity to communicate what we want and develop a document that we can utilize as a model for other jurisdictions that adopt similar registries. What do you think should be included in our public comment? Feel free to copy this inquiry to other listservs and forums, requesting that people on communities this has been
forwarded to respond directly to me at aneeman@autisticadvocacy.org
Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autistic advocacy. org
732.763.5530
Department of Health and Senior Services Proposes New Rules and Amendments at N.J.A.C. 8:20, which establishes the Birth Defects Registry (emphasis added) The Division of Family Health Services in the Public Health Services Branch of the Department of Health and Senior Services proposes new rules and amendments at N.J.A.C. 8:20, which establishes the Birth Defects Registry.
The proposal would establish an autism registry and a severe neonatal jaundice registry.
This proposal would require health care professionals to report diagnoses of autism in children from birth through twenty-one years of age. N.J.S.A. 26:2-187 requires the Department of Health and Senior Services to implement the reporting of autism and to establish an autism registry. Autism is adevelopmental disorder of brain function that is typically manifested by impaired social interaction, problems with verbal and nonverbal communication and imagination, and unusual or severely limited activities and interests.
Under the proposal, health care professionals would not report the personal identifying information of a child diagnosed with autism if the child's parent, legal guardian or custodian objects to the reporting of this information, or if the individual through age twenty-one who is diagnosed with autism objects to the reporting. Health care professionals would be required to inform the parent, legal guardian, custodian or individual through age twenty-one of the right to refuse to report identifying information.
The proposal would require clinical laboratories to report newborns with severe neonatal jaundice, a condition that is caused by a buildup of bilirubin, an orange-yellow pigment found in bile. Toxic levels of bilirubin can cause severe neurological damage called kernicterus. N.J.S.A. 26:8-40.21 requires the Department to establish a severe neonatal jaundice registry.
The proposal would also make the reporting requirements for congenital conditions more consistent with the Centers for Disease Control and Prevention (CDC) Guidelines, and extend the reporting requirements for congenital conditions from birth through five years of age.
Under the proposal, the information on individuals with these conditions that is reported to these registries would remain confidential. The data contained in these registries would be used for public health research, needs assessments, and public health investigations.
The notice of proposal appears in the November 17, 2008 issue of the New Jersey Register.
The public has until January 16, 2009 to comment on the proposals. Persons wishing to comment on the proposals must submit their comments in writing to Ruth Charbonneau, Director, Office of Legal and Regulatory Affairs, New Jersey Department of Health and Senior Services, PO Box 360, Trenton, NJ 08625. Written comments on the proposals must be postmarked on or before January 16, 2009, which is the close of the 60-day public comment period for the proposals.
Again, please remember to respond directly to Ari Ne'eman at aneeman@autisticadvocacy.org.
The letter is technically behind a LJ-Cut. I apologize if it isn't working -- it shows up in edit but not consistently on the journal.
The Autistic Self Advocacy Network is a signatory to this Virginia Coalition for Students with Disabilities letter to the Governor of Virginia. The letter requests an opportunity to directly discuss significant concerns about the proposed Special Education Regulations changes with Governor Kaine. The proposed regulations contain major changes that would reduce or eliminate broad categories of protections for parents and students.
( The Letter ... )
Virginia Coalition for
Students with Disabilities
November 6, 2008
Dear Governor Kaine:
Thank you for reaffirming your promise during your recent appearance on WTOP's recent "Ask the Governor" program not to reduce existing parental involvement in the proposed special education regulations. In doing so, you raised the hopes of parents across Virginia that misguided efforts to take away rights from parents of children with disabilities – rights that are vital to ensuring equality and fairness in the parent-school partnership – will not succeed.
We are extremely disappointed that the recently approved regulations reduce parent involvement and consent rights in disregard of the desires expressed in your memo of March 21, 2008 to the Board of Education. With regard to the specific measures you identified, the regulations fail to ensure the right of consent for parents of transfer students and the right to participate in a Functional Behavioral Assessment of their child. You also stated your intention in the memo that parent involvement not be reduced in other areas. However, these final proposed regulations continue to:
- Deny parents the right to participate in the referral and screening process through the elimination of "Child Study Committees" as well as required state-wide uniform procedures and timelines.
- Deny parents the right to receive timely re-evaluation reports due to the approval of an unnecessary extension of the timeline.
- Deny children with disabilities access to appropriate services due to new restrictive and arbitrary eligibility criteria.
- Deny young children with disabilities access to appropriate services due to new limits on the label of "developmental delay".
- Deny parents the right to ensure the inclusion of short-term objectives or benchmarks in their children's IEPs.
We know that some supporters of the recently approved regulations are arguing that they constitute a reasonable compromise between saving money and serving children. This is untrue. The proposed regulations cannot be considered a reasonable compromise when only one party loses rights and the other party gains them. Worst of all, the losers in this situation are Virginia's most vulnerable children. For your further review we have attached a full list of all areas where changes in the proposed regulations roll back current rights and protections for children.
Parents have contacted you not to ask for new rights and protections, but to advocate for retaining the rights they now have. These are rights that have well served children with disabilities for decades and have no justifiable reason for being eliminated. Certainly, denying services to children who need them will not save money, but will shift the burden for meeting their needs onto unprepared teachers and overstretched schools. Such an approach will only negatively impact classroom instruction, teacher retention, and state performance on standardized tests, while increasing suspension/expulsion rates and leaving many children with disabilities unprepared to face the challenges of adult life.
The proposed regulations represent a significant policy shift for Virginia. If these regulations are approved in their current form, an entire class of citizens in Virginia will lose rights for the first time in over 20 years. Instead of ensuring that Virginia leads the way as you have championed, these regulations will put the Commonwealth years behind by taking away the hard won gains of children with disabilities.
We request an opportunity to directly discuss these significant concerns with you. Please let us know a date and time when you might be available to meet. The individual futures of tens of thousands of Virginia's most vulnerable children are truly at stake and require your direct intervention.
Sincerely,
Maureen Hollowell
Access Independence, Inc
403 B Loudoun Street
Winchester, VA 22601
Contact: Donald Price, Executive Director
Email: askai@accessindependence.org
Appalachian Independence Center,Inc.
230 Charwood Drive
Abingdon, VA 24210
Contact: Greg Morrell, Executive Director
Email: gmorrell@naxs.net
The Arc of Loudoun
71 Lawson Road
P.O. Box 243
Leesburg, VA 20178
Contact: Eleanor Voldish, Executive Director
Email: Eleanor@thearcofloudoun.org
The Arc of Northern Virginia
98 N. Washington Street
Falls Church, VA 22046
Contact: Nancy Mercer, Executive Director
Email: nmercer@thearcofnova.org
The Arc of Rappahannock
1640 B Lafayette Boulevard
Fredericksburg, VA 22401
Contact: Jan Griffin, Executive Director
Email: exec@arcr.vacoxmail.com
The Arc of Virginia
2025 E. Main Street, Suite 107
Richmond, VA 23223
Contact: Jamie Trosclair, Executive Director
Email: jtrosclair@arcofva.org
The Autistic Self Advocacy Network (ASAN)
1660 L Street, NW, Suite 700
Washington, DC 20036
Contact: Paula C. Durbin-Westby, Board of Directors Virginia Coordinator
Email: pdurbinwestby@gmail.com
Autism Society of American – Central Virginia
P.O. Box 29364
Richmond, VA 23242-0364
Contact: Bradford Hulcher
Email: asacv@aol.com
Autism Society of America – Northern Virginia
98 N. Washington Street
Falls Church, VA 22046
Contact: Christopher Waddell, President
Email: acwaddell@gmail.com
A Voice for GAP Kids
P.O. Box 174
Rockville, Virginia 23146
Contact: Tim Moore
Email: tim@voiceforgapkids.com
Blue Ridge Independent Living
1502 B Williamson Road NE
Roanoke, VA 24012
Contact: Karen Michalski-Karney, Executive Director
Email: kmichalski@brilc.org
Clinch Independent Living Services
P.O. Box 2741
Grundy, VA 24614
Contact: Betty Bevins, Executive Director
Email: bbevins@vmmicro.net
DAC (disabled Action committee)
14405 Artery Lane, #11
Dale City, VA 22193
Contact: Keith Kessler
Email: DAC4VA@aol.com
disAbility Resource Center
409 Progress Street
Fredericksburg, VA 22401
Contact: Debe Fults, Executive Director
Email: dfults@cildrc.org
Disabilities Resource Network
c/o Bedford Community Resource Center
403 Otey Street
Bedford, VA 24523
Contact: Didi Zaryczny, Chairperson of the Board of Directors
Email: didizautism@aol.com
Down Syndrome Association of Hampton Roads
6300 E. Virginia Beach Boulevard
Virginia Beach, VA 23502
Contact: Andrea Anderson
Email: dsahr@verizon.net
Down Syndrome Association of Northern Virginia
98 N. Washington Street
Falls Church, VA 22046
Contact: Philip Pedlikin, President
Email: philip.pedlikin@plateau.com
Eastern Shore Center for Independent Living
4364 Lankford Highway
Exmore, VA 23350
Contact: Althea Pittman, Executive Director
Email: altheapittman@yahoo.com
Endependence Center
6300 E. Virginia Beach Boulevard
Norfolk, VA 23502
Contact: Maureen Hollowell
Email: mhollowell@endependence.org
ENDependence Center of Northern Virginia, Inc.
3100 Clarendon Blvd.
Arlington, VA 22201
Contact: David Burds, Director
Email: davidb@ecnv.org
The Fairfax County Council of PTAs (FCCPTA)
8115 Gatehouse Road
Falls Church, VA 22042
Contact: Sheree Brown Kaplan, Chair, FCCPTA Special Education Committee
Email: specialedchair@fccpta.org
Giraffe Program
529 Ramsey Ridge
Clinchco, VA 24226
Contact: Judy McKinney
Email: ambercounts@localnet.com
Independence Empowerment Center
9001 Digges Road, Suite 103
Manassas, VA 20110
Contact: Mary D. Lopez, Ph.D., Executive Director
Email: mlopez@ieccil.org
Independent Resource Center
815 Cherry Avenue
Charlottesville, VA 22903
Contact: Tom Vandever, Executive Director
Email: tvandever@ntelos.net
Junction Center for Independent Living
P.O. Box 1210
Norton, VA 24273
Contact: Dennis Horton, Executive Director
Email: jcil@junctioncenter.org
Learning Disabilities Association of Virginia (LDAV)
3914 Monument Avenue
Richmond, VA 23230-3902
Contact: Dr. Jean Lokerson, President
Email: jlokerso@vcu.edu
Lynchburg Area Center for Independent Living
500 Alleghany Avenue, Suite 520
Lynchburg, VA 24501
Contact: Phil Theisen, Executive Director
Email: Phil@lacil.org
Parents in Partnership
18301 Black Hollow Rd.
Abingdon, VA 24210
Contact: Melissa Meade
Email: mameade@ntelos.net
Peninsula Center for Independent Living Insight Enterprises, Inc
2021 A Cunningham Drive Suite 2
Hampton, VA 23666
Contact: Ralph Shelman, Executive Director
Email: Rshelman@iepcil.org
Resources for Independent Living
4009 Fitzhugh Avenue
Richmond, VA 23230
Contact: Sandra Wagener, Executive Director
Email: wageners@cavtel.net
Tidewater Autism Society of America
6300 E. Virginia Beach Boulevard
Norfolk, VA 23502
Contact: JoAnna Bryant, President
Email: tidewaterasa@verizon.net
Valley Associates for Independent Living
205-B South Liberty Street
Harrisonburg, VA 22801
Contact: Marcia DuBois, Executive Director
Email: vail@govail.org
Virginia Board for People with Disabilities
202 N. 9th Street, 9th Floor
Richmond, VA 23219
Contact: Heidi Lawyer, Executive Director
Email: Heidi.lawyer@VBPD.virginia.gov
Virginia Office for Protection and Advocacy
1910 Byrd Avenue, Suite 5
Richmond, VA 23230
Contact person: Julie Kegley, Staff Attorney
Email: Julie.Kegley@vopa.virginia.gov
If you'd still like to indicate to PETA the need to avoid exploiting the autistic community in its future advertising, you can write to them at info@peta.org as well as call them at 757-622-7382 and dial 0. You can also sign our petition on this topic, further indicating to PETA and the world that it does not pay to try to attack and exploit the autistic and cross-disability communities.
Incidents like this show the need for a strong and activist autistic self-advocacy movement, working closely with the broader disability rights community. By uniting on issues like this one, we can work to address the persistent biases that pervades the public discourse about autism in specific and disability in general. As we speak, the blind community is uniting against false and offensive depictions of their community in the new movie, "Blindness". Over the last few months, disability rights activists from all parts of the community came together to fight against outdated and damaging portrayals of people with intellectual disabilities in the movie, "Tropic Thunder". Less than a year ago, the disability community united behind our successful effort to stop the NYU Child Study Center's "Ransom Notes" ad campaign, which portrayed children with disabilities as kidnap victims.
Like any other community, we have the right to be treated with respect, in media, in service-delivery and in all aspects of society. While responses to offensive depictions of disability in popular culture are not the only battle in the broader struggle for equity, inclusion, quality of life and opportunity for all people with disabilities, this issue must remain an important priority. Culture helps to shape the reality we live in. By challenging the exploitative and offensive public discourse on disability we find today, we can advance a broader agenda for disability rights. The disability community is on the march and we will not be stopped.
Thank you once again for your effective action on this issue. I look forward to working with all of you once again in the future. Remember, "Nothing About Us, Without Us!"
Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org
732.763.5530
Recently, the organization People for the Ethical Treatment of Animals (PETA) launched a new ad campaign entitled, "Got Autism?", misleadingly implying that the consumption of milk is associated with the cause of the autism spectrum. PETA is misinforming the public about autism and thus joining a long line of unscrupulous groups that have sought to try and spread fear about autism as a means of pushing their particular agendas.
Attempts such as these treat individuals with disabilities as pawns in the efforts of other constituencies. By refusing to acknowledge the right of the autistic community to be referred to with respect instead of as the focus of public hysteria, PETA contributes to a state of affairs which marginalizes the disability community. People with disabilities, our families and our supporters deserve better than the exploitation and fear-mongering that comes about when disability is used as a means of scaring the general populace. For millions across the globe, the answer to PETA's "Got Autism?" question is an unequivocal yes. That should not spell the end of our lives or prevent us from being fully included throughout society. By exploiting us, PETA becomes a culprit in the social forces that marginalize people with disabilities and lead to the discrimination and prejudice that truly disable us.
Let PETA know how you feel about its choice to exploit autistic people by writing to them at* *info@peta.org* *or call them at* **757-622-7382 and dial 0. In addition, we encourage you to express your support for these ads' swift withdrawal by signing this online petition.
The Autistic Self-Advocacy Network (ASAN) is a non profit organization run by Autistics (those on the Autism Spectrum), those with other unique neurological types and neurotypical family members, professionals, educators and friends. ASAN was created to provide support and services to individuals on the autism spectrum while working to change public perception and combat misinformation by educating communities about persons on the Autism Spectrum.
We believe that the autism spectrum and those on it are important and necessary parts of the wide diversity present in human genetics. ASAN supports Autism Acceptance through measures to promote success for each person on the spectrum. By abandoning old and inaccurate models of pathology and adopting a new approach focusing on both the unique challenges and strengths of autistics, we believe that we can improve outcomes and promote a new paradigm of inclusion and respect. As an organization founded by autistics and friends and family of those on the spectrum, we are committed to advancing self-advocacy, self-determination, self-awareness and independent living throughout all aspects of society.
Profile
![[info]](http://l-stat.livejournal.com/img/userinfo.gif)
asanswvirginia- ASAN in Southwestern Virginia
- Autistic Self Advocacy Network
Syndicate
