Yesterday I received an alert from Wrightslaw about the Keeping All Students Safe Act (S.2020). This was an action alert calling on everyone to contact our Senators asking for their support for the act. Here is an excerpt from the call to action:

Please email your Senators and ask them to cosponsor the Keeping All Students Safe Act (S.2020).

This bill will protect children nationwide from restraint and seclusion in schools.

The need for this legislation is exemplified yet again in a horrific situation in Middletown, CT regarding the use of school seclusion rooms.

The situation described by parents and students in this report is horrific and abusive. Aptly termed “scream rooms” in this media report, such seclusion rooms are exactly what the Federal bill, S. 2020, pending in the Senate seeks to eliminate.

Senator Tom Harkin (Chair, Health Education Labor and Pension Committee) introduced S. 2020 in December. The bill would ban physical restraint except in emergency situations when there is an immediate threat of serious bodily injury.

The bill bans seclusion (confinement) of children in locked rooms or rooms from which they cannot exit. It bans life-threatening restraint that interferes with breathing or the ability to communicate, and mechanical and chemical restraints. It requires schools to notify parents within 24 hours of restraint.

For more information, read the entire Wrightslaw Keeping All Students Safe Act (S.2020) Action Alert.

I received the following Action Alert via the Wrightslaw Special Ed Advocate newsletter and I wanted to pass it on to all of you. Although this isn’t autism specific, it could affect all children with disabilities.

Do not allow schools to lower the academic expectations for students with disabilities.

On October 19th, Senator Isakson (R-GA) is expected to offer an amendment to No Child Left Behind during Senate Committee consideration of the Elementary and Secondary Education Reauthorization Act of 2011.

The amendment, S 1571, would discriminate against students with disabilities by allowing schools to significantly lower the academic expectations for students, based on their scores in state accountability tests. This use of this test, for this purpose, would apply only to children with disabilities.

Tell your Senator to vote NO on the Isakson Amendment.

S 1571, the Isakson amendment:

• would provide additional remediation to a student who scored poorly on the state accountability test, unless that child had a disability.
• would remove the limits on how many students with disabilities can be counted as making sufficient progress using less challenging systems of standards and assessments.
• would allow schools to take millions of students with disabilities off track for a regular high school diploma as early as 3rd grade, simply because they receive special education services.

Read this summary by Wrightslaw Research Editor Sue Whitney, S1571 Proposed by Senator Isakson Would Discriminate Against Children with Disabilities.

For more information: ALERT! Tell Your Senator to Vote NO on the Isakson Amendment.

The battle of the budget, deficit reduction and the debt ceiling rages on in Washington. The proposed Medicaid changes could have a significant impact on adults with autism. The following is an executive summary by the Autistic Global Initiative (AGI) concerning the proposed Medicaid changes:

Executive Summary: Response to the Advanced Notice of Proposed Rule Making for CMS-2296-P, Medicaid Program Home and
Community-Based Services (HCBS) Waivers

Submitted by A Four-State Alliance for ASDs Adult Community Housing & Living and The Autistic Global Initiative (AGI)

This executive summary responds to the ANPRM, detailed in CMS-2296-P. While in some instances the proposed rule change is supportive of the populations we represent, there are several instances where sweeping rule changes negatively impact individuals with autism spectrum disorders (ASDs) and related disorders, and do not afford the nuanced diversity of needs and supports that the terms “person-centered” and “community-based” imply. For a copy of the full letter, see: http://www.autism.com/pdf/response/agi_medicaid_response_rev.pdf.

Participants in this executive summary and the full comment letter have come together for a specific purpose: to offer a collaborative statement that combines multiple perspectives from the autism community. In doing so, we offer commentary that includes self-advocates with ASDs, parents of individuals with autism, service providers, and professionals working in the autism and developmental disability fields. Although we hold a variety of opinions and beliefs, we find the process of understanding one another to be our strength. We share the fundamental values that housing options for our citizens with ASDs and other developmental disabilities must support individuals’ safety and security, enable them to enjoy meaningful, productive lives, recognize their value within the broader community and promote choices for them and their families.

Our position is simple: one size does not, must not and cannot fit all. Policies and settings must recognize the heterogeneity and characteristics of individuals with autism and provide appropriate evidence-based supports. We need more quality options as they relate to design, service delivery and training. Key principles for housing options must support the individual’s daily life choices, interactions with those without disabilities and accessibility to the broader community. Options must take a multidimensional approach, including the use of technology. Policies that rule out entire housing models cannot be described as person-centered.

With the rapidly increasing population of adults with ASDs and our country’s fiscal challenges, we must encourage not discourage innovation now more than ever. Greater demand and fewer government resources have resulted in a “New Services Paradigm” (NSP) now being implemented, which shifts 24/7 support resources to those who are most in need; whose support requirements reflect that they are either a danger to themselves or to others; or who are at immediate risk of becoming homeless.

For those whose needs are not as severe, they will be asked to stay at home much longer with their parents, their siblings or other extended family. This group will be offered a menu of service packages and options to assist their families in long-term care, either within the family home or in the community. The result: families will be operating as case managers and service providers. Proper training by support brokers/coordinators in self-determination and self-direction models will be indispensible. In order for the New Service Paradigm to function, individuals with disabilities, their families and the universe of support providers at home and in the community must be informed, trained, empowered and well prepared to successfully navigate daily life and long-term security in the home and community.

Summary of Other Comments on CMS-2296-P:

• Changes should not result in a diminution of current services and supports.
• Settings created must recognize the characteristics of individuals with ASD and provide appropriate evidence-based supports for effective daily life skills training and behavioral therapies.
• Intentional communities can simultaneously address several societal needs.
• The current fiscal environment is not a time to discourage innovation in either design or service delivery.
• Many individuals already use waivers for intentional or agricultural communities. In addition to those who already use waivers for intentional or agricultural communities, others participate in such communities while on the waiting list for waivers. Neither group should be forced to choose between their home and accepting a waiver.
• The purpose of HCBS waivers is to promote choices for individuals. Choice should rest with the waiver recipient and not be dictated by policy.
• Assisted living models should not be arbitrary, by becoming limited to those of a certain age. Assisted living options should be available to those who choose them and for whom they are appropriate, regardless of age.
• In many cases, models that separate control of the housing from services offer greater stability and flexibility for the individual.
• Successfully transforming a person-centered plan to a self-directed life requires weaving existing programs and funding streams with natural supports into new patterns. The move to person-centered planning gives individuals, their allies and families unprecedented ability to direct their futures. To coordinate these elements, all affected require training about what is both positive and possible.
• “Autism One-Stops” could fill a niche by acting as a focal point for training of service providers. In so doing, Autism One-Stops answer the call of Advancing Futures for Adults with Autism (AFAA), representing a collaboration of 14 organizations, and the AFAA National Public Policy Agenda, which prioritizes the training of direct care workers to provide vocational and residential assistance to adults living with autism.
• The standard audit process is the best way to achieve compliance. Training is needed to ensure providers successfully play by the rules.
  Providers need to have a way to cover the cost of staff and family trainings for groups of parents if compliance is to improve.
  CMS must avoid cutting hours and reimbursement rates if health and safety are to be maintained and experienced providers are to remain in the field.

To learn more about AGI, visit www.autisticglobalinitiative.com.

Photo: VinothChandar/Flickr

I received this action alert from the Autism Society of America, please take action today and ask Congress to cosponsor the IDEA Fairness Restoration Act.

MPORTANT ACTION ALERT: CALL/EMAIL CONGRESS TO COSPONSOR IDEA FAIRNESS RESTORATION ACT
WEDNESDAY, MAY 4, 2011

On Wednesday, May 4, 2011, please contact your senators and representatives and ask them to cosponsor the IDEA Fairness Restoration Act (S.613 AND H.R. 1208). This bill will allow parents to recover expert witness fees when they prevail in due process hearings and court actions under the IDEA.

IDEA gives parents the right to an impartial due process hearing, but parents must be able to afford expert witnesses to testify at those hearings. Expert witnesses can include psychologists; physicians; speech, occupational, physical, and other therapists; educational experts; positive behavioral support experts, and others. Without expert witnesses, most parents cannot prevail. Sometimes, school districts sue parents and parents must have expert witnesses to adequately defend themselves.

The IDEA Fairness Restoration Act will restore the right to recover expert witness fees for parents and students with disabilities. Congress intended that parents have this right when it amended the IDEA in 1986. But in 2006, the Supreme Court acted contrary to this intent and held that parents could not recover expert witness fees in Arlington Central School District v. Murphy. Plaintiffs in other civil rights cases, like ADA cases, recover fees. This bill would simply give parents the same right.

ON WEDNESDAY, MAY 4, 2011, PLEASE CONTACT YOUR SENATOR AND REPRESENTATIVE AND ASK THEM TO COSPONSOR S.613 and H.R. 1208. It is crucial that Congress hear from parents of children with disabilities, advocates, attorneys, family, friends, and colleagues that this legislation is very important. If you cannot do this on May 4, please do it the week of May 2-6, 2011.

Please share this email with others.

HOW TO CONTACT CONGRESS: It is best to call your Representative and Senators. Calls are more personal and receive more attention. Even a 2 minute call is very helpful. But if you need to email because of work schedule, disability, or other reason, please do so.

CALL CONGRESS: Call your Representative and Senators and ask them to Cosponsor S.613 and H.R. 1208, the IDEA Fairness Restoration Act. You can call 202-224-3121 (TTY 202-225-1904). If you do not know who your representatives are, you can look them up at www.house.gov or www.senate.gov. Ask for the staff member who handles education or disability. Share with them the information below:

SEND AN EMAIL MESSAGE TO CONGRESS: You can email your representatives through their special forms on the House of Representatives website, http://www.house.gov/writerep, and write your Senators through their Web form on the Senate website, http://1.usa.gov/Senat

SAMPLE EMAIL / INFORMATION TO SHARE IN YOUR CALL: Here is information you can share with Congress. You can use it for your phone call, or you can cut and paste it into an email form. If you email, it helps to personalize it with even a few sentences about your child or your legal/advocacy practice. You might add something like “We are the parents of a child with autism and it is important to us that you support this bill, so we can afford due process if we are ever forced to go.” Or write something longer and more personalized.

Dear Congressman/Senator,
Please cosponsor the IDEA Fairness Restoration Act H.R. 1208 and S.613. It will restore Congress’ original intent in enacting the Handicapped Children’s Protection Act of 1986 that parents who prevail in administrative hearings and court actions be allowed to recover expert witness fees. The bill would overturn the Supreme Court decision in Arlington Central School District v. Murphy (2006).

When school districts provide an education so poor that they fail their legal obligations, parents can seek an impartial due process hearing to protect their child. In those hearings parents must provide testimony from such expert witnesses as psychologists, doctors, therapists, and educational experts. This testimony is needed to prove that a free appropriate public education was not provided to their children. Few parents can afford expert witnesses. Nearly 36% of children with disabilities live in families earning less than $25,000 a year; over two-thirds in families earn less than $50,000 a year. Without the ability to afford expert witnesses, the right to a due process hearing is not meaningful for most parents.

The bill simply gives parents the same right as prevailing plaintiffs under the Americans with Disabilities Act and other similar laws to recover expert fees. When Congress passed the Handicapped Children’s Protection Act of 1986, it intended that parents would recover expert witness fees in IDEA cases, as clearly stated in the Conference Report. But the Murphy case overrode that intent. We ask Congress to restore its original intent and provide parents with the right to recover expert witness fees if they win their case.

Sincerely yours,
Your name here

The Individuals with Disabilities Education Act (IDEA) is the federal legislation that governs special education services in schools, including Individualized Education Plans (IEPs). While IDEA isn’t specific to children with autism, many children with autism are receiving services protected by IDEA. IDEA was last reauthorized in 2004 and it is expected that another reauthorization will be coming in the next year or two. In preparation for this reauthorization, several organizations have joined forces to sponsor the IDEA National Survey.

The following is a description of the survey:

The IDEA National Survey Project is sponsored by the National Center for Learning Disabilities, National Down Syndrome Society, Autism Society of America, Autism National Committee, and The Advocacy Institute. Our purpose is to study whether the playing field is level for children with disabilities and their parents, and whether their rights are protected.

The survey will examine whether parents are treated as equal partners in their children’s education. We ask questions about whether the rights of students with disabilities and their parents protected throughout the special education process, including IEP meetings, decisions about special education, evaluations and eligibility, and Due Process and Impartial Hearings. We also ask about inclusion and whether children with disabilities receive the education they need, or whether they are deprived of important services. We will be using your answers to compile a report about the experiences of parents and children with disabilities and these issues. See the survey Privacy Policy for more information.

All disabilities are welcome! The survey is not limited to the disabilities on which the sponsoring organizations focus. We are studying these issues as they affect all children with disabilities and special needs. We also have surveys for all members of the community.

There are several different surveys available including those for parents, for individuals who have been denied special education surveys, a survey for attorneys and other professionals as well as a self-advocate survey.

Please take a few minutes to fill out the survey and pass this information on to others.

Photo: Andy Ciordia/Flickr

Learn more about IEPs, special education law, extended school years, least restrictive environment (LRE) and more at the Wrightslaw Special Education Law and Advocacy Training in Roanoke, Virginia.

Conference Dates: May 20, 2011
Conference Location: Roanoke, VA
Conference Venue: Sheraton Roanoke Conference Center
Speakers: Wayne Steedman
Conference Topics:

• Section 1401 Definitions: Special Education, Related Services, LD, etc.
• Section 1412 Extended School Year, Child Find, Least Restrictive Environment/Mainstreaming/Inclusion, Private Placements, Statewide Assessments
• Understanding Test and Measurements, and the Bell Curve, Standard Scores, Scale Scores, % Ranks, Grade Equivalent, Age Equivalent
• Section 1415 Prior Written Notice, Procedural Safeguards Notice, Mediation, Due Process Hearing, Appeal, Discipline, Age of Majority
• Special Ed Advocacy for the Parent, Advocate, and Parent’s Attorney

Contact Phone Number: 877-823- 2237
Email Address: infofacesofvirginiaorg

Recommended Reading:

• Wrightslaw: Special Education Law 2nd Edition
• Wrightslaw: All About IEPs
• Wrightslaw: From Emotions to Advocacy – The Special Education Survival Guide

The following is from the Autism Research Institute (ARI) requesting signature for a petition to add an ICD-9 diagnostic code for wandering behavior, which is a concern for many parents of children with autism.

An ICD-9-CM diagnostic code for wandering is very much needed because too many individuals on the autism spectrum are at-risk for this often dangerous behavior.

Among many things, such a diagnostic code will likely lead to:

• Greater awareness of wandering behavior by physicians, emergency search-and-rescue teams, other health-care workers, caregivers, and educators
• The creation and distribution of prevention and advice materials
• More research on this problem and ways to prevent it.

The National Autism Association has spearheaded a national effort to establish an ICD-9-CM diagnostic code for wandering behavior. Please take a moment to complete the online petition.

Click Here to sign the petition to help keep our loved ones safe from wandering-related injuries and death

Steve Edelson, Ph.D.
Executive Director, Autism Research Institute

Photo: huntz/Flickr

The following Legislative Action Alert focuses on Arizona SB 1593 – which is putting autism insurance coverage in jeopardy in the state. If you know of anyone in Arizona that this legislation would affect, please notify them of this post so that they can contact their legislators!

Dear Autism Community,


SB 1593 is designed to allow corporations to purchase health insurance over state lines – this allows insurers to avoid meeting the minimum standards for health insurance set by the state of Arizona.  In particular, it means that insurers would no longer be required to provide autism treatments as part of their health coverage.  Currently, over 200 autism families in Arizona are receiving ABA services through their insurance plans, but those services will likely disappear if this bill passes.

SB 1593 has just passed the Arizona Senate, and is now moving towards a vote in the Arizona House of Representatives.    

We recommend that you ask your legislators to oppose this bill unless it is modified to require insurers to meet the minimum standards set by the state of Arizona, including the provision of autism treatments. 
 
To find out who your legislators are, go to www.azleg.gov and on the right side of the screen is a link to “Find my Legislator”. You can enter your address and it will find your legislative district and legislators.   There are three in each district, two representatives and one senator. 
      
It is critical that you reach out to your legislators and let them know your thoughts. Please be extremely respectful and let them know you are a constituent.   One contact by their constituent often makes a difference!   

Sincerely,
 
James B. Adams, Ph.D.
President, Autism Society of Greater Phoenix

Photo: boeke/Flickr

The team at Wrightslaw is taking their special education law and advocacy conference to the next level with the upcoming two-day boot camp in West Virginia. Pet and Pam Wright will be speaking at the event at the Stonewall Resort in Roanoke, WV.

Conference Dates: April 20-21, 2011
Conference Location: Roanoke, WV
Conference Venue: Stonewall Resort
Speakers: Pete & Pam Wright
Conference Topics:

• Overview: Individuals with Disabilities Education Act (IDEA-97) and the Reauthorized IDEA of 2004
• Section 1415:Procedural Safeguard s – Prior Written Notice, Procedural Safeguards Notice, Mediation, Due Process Hearings, Appeal, Dicipline
• Section 504: Discrimination, Retaliation, Damages
• Emotions, Conflict
• School Culture

Contact Phone Number: 1-800-950-5250
Email Address: bgivenwvadvocatesorg

Recommended Reading:

• Wrightslaw: Special Education Law 2nd Edition
• Wrightslaw: All About IEPs
• Wrightslaw: From Emotions to Advocacy – The Special Education Survival Guide

Photo: liftarn/Flickr

If you’re the parent of a child with special needs, whether those needs be developmental, medical or emotional, and you live in the Greensboro, North Carolina area then check out the Wrightslaw Special Education Law and Advocacy Training coming your way.

Wrightslaw is one of the best sources about IDEA 2004, IEPs, extended school years and more for parents. Understanding your rights, and your child’s rights, will help you get the most out of the school.

Conference Date: April 7, 2011
Conference Venue: Westover Church 505 Chapel Road
Speakers: Pete Wright
Conference Topics:

• Section 1400 Findings, Purpose
• Section 1401 Definitions: Special Education, Related Services, LD, etc.
• Section 1412 Extended School Year, Child Find, Least Restrictive Environment/Mainstreaming/Inclusion, Private Placements, Statewide Assessments
• Special Ed Advocacy for the Parent, Advocate, and Parent’s Attorney
• Legal, systematic and “school culture” obstacles to compliance with IDEA-04

Contact Phone Number: 336-605-4654, 336-508-4730
Email Address: cbruffey2bellsouthnet

Recommended Reading:

• Wrightslaw: Special Education Law 2nd Edition
• Wrightslaw: All About IEPs
• Wrightslaw: From Emotions to Advocacy – The Special Education Survival Guide