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References Parents and Professionals have found helpful

Special Education Resource Links


Information about New York State:

Regulations of the Commissioner of Education Part 200 Students with Disabilities and Part 201 Procedural Safeguards for Students with Disabilities Subject to Discipline (Updated October 2007) http://www.vesid.nysed.gov/specialed/publications/lawsandregs/Oct2007.pdf

Special Education in New York State for Children Ages 3–21 ~ A Parent’s Guide English: www.vesid.nysed.gov/specialed/publications/policy/parentguide.htm

Spanish: www.vesid.nysed.gov/specialed/publications/policy/spanishparentguide.htm

New York State Department of Education:  Notice of Procedural Safeguards Part B, effective Sept 1, 2007  

http://www.vesid.nysed.gov/specialed/publications/policy/psgn807.doc

www.vesid.nysed.gov/specialed/publications/policy/testaccess/policyguide.htm 

Connecting the Disability Community to Information and Opportunities: www.disabilityinfo.gov

The Long Island Family Support Services Advisory Council:
Provides the Long Island Developmental Disabilities Service Office (LIDDSO) with a
consumer and family oriented vision of family support services and family centered
feedback on service:  www.lifssac.com

New York State PTA & the New York State United Teachers Union collaborated and created “Guide to Special Education"

http://www.nysut.org/cps/rde/xchg/nysut/hs.xsl/k12_6055.htm

Chart: Graduation Requirements for Students Entering 9th Grade In:  http://www.emsc.nysed.gov/ciai/gradreq/GradReq3columnStyle7_1.pdf

NYS Offic of Mental Retardation and Developmental Disabilities:  Family Support Services Grant Programs: Respite, Family Training, Advocacy, Counseling & Support Services, Crisis Intervention, Voucher Reimbursement, Sr. Day Programs, Recreation, Non-Medicaid Service Coordination: www.omr.state.ny.us

Long Island Family Support Consumer Council: The Council's role is to provide a strong voice for individuals and families on the local level, working with and through the DDSO to plan, develop and monitor Family Support Services in that area.  www.lifscc.com

The National Center on Secondary Education and Transition (NCSET) coordinates national resources, offers technical assistance, and disseminates information related to secondary education and transition for youth with disabilities in order to create opportunities for youth to achieve successful futures. http://www.ncset.org/

Special Needs Resources: http://liparentonline.com/special_needs_developmental_physical_disabilities_services.html

Early Intervention Services: http://liparentonline.com/special_needs_early_intervention_services.html

Mental Health Services:  http://liparentonline.com/special_needs_mental_health_services.html

Local Support Websites: http://liparentonline.com/local_support_websites.html

 

ADHD / ADD:

Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD)  http://www.chadd.org

ADDitude Magazine: Living Well with ADD and Learning Disabilities:   http://www.additudemag.com/

The National Resource Center on AD/HD is the nation's clearinghouse for science-based information about all aspects of attention-deficit/hyperactivity disorder (AD/HD).

English: http://www.help4adhd.org/

Spanish: http://www.help4adhd.org/espanol.cfm

 Assistive Technology:

Family Center on Technology and Disabilities

http://www.closingthegap.com/

English: http://www.fctd.info/

Spanish: http://www.fctd.info/resources/index_es.php

REFERENCE POINTS:  Technology Resources
 
ACCESSIBLE INSTRUCTIONAL MATERIAL FOR CHILDREN
The National Center on Accessible Instructional Materials offers information and resources for families and students on topics such as AIM at home and at school, assistive technology, and alternate-format learning materials. For more information go to http://aim.cast.org/learn/aim4families
From: NICHCY's News You Can Use


 

FAMILY GUIDE TO ASSISTIVE TECHNOLOGY AND TRANSITION PLANNING
Published by the Family Center on Technology and Disability (FCTD), this 50 page guide is aimed at providing famiiles with the information they need to effectively prepare for and participate in periods of transition in their children's lives. The Guide is available in both English and Spanish. For more information go to http://www.fctd.info/show/fig_summary


 

NEW iPOD TOUCH WORKBOOK FOR INDIVIDUALS WITH COGNITIVE CHALLENGES
"Organizing Your Life with the iPOD Touch: Making Cognitive Connections at Home, Work, and School" is a workbook developed by the PDA 4 Memory Project for individuals living with brain injuries and other cognitive issues. Topics covered in the workbook include: Making Cognitive Connections, iPod Touch Basics, The Clock App, The Calendar App, The Contacts App and The Notes App. For more information go to http://id4theweb.com/iPod_book.cfm

 
IEP CHECKLIST iPHONE APP
The Parent Educational Advocacy Training Center (PEATC) has announced the development of an Individualized Education Program (IEP) Checklist iPhone application. The new IEP application helps parents of students with disabilities become better informed by making IEP information easier to access. This tool is for parents and teachers to consider as they develop an IEP. Not every item on the checklist is required by special education regulations. For more information go to http://www.peatc.org/peatc.cgim?template=IEPChecklistiPhone

 

NEW STUDY REVEALS LARGE DIFFERENCES IN USAGE OF ASSISTIVE TECHNOLOGY BY AGE, RACE, ETHNICITY, EDUCATION, INCOME, AND TYPE AND SEVERITY OF DISABILITY
Assistive technology is essential to the lives of many people with disabilities, but disparities in usage put certain segments of the disability population at a particular disadvantage. This article uses survey data and statistical modeling to explore differences in technology usage across disability subpopulations. Responses to a 2005 survey of nearly 2,000 adult consumers of California Independent Living Centers reveal large differences in technology usage by age, race, ethnicity, education, income, and type and severity of disability. To access the study go to http://www.pascenter.org/publications/publication_home.php?id=915

 

FIND AN ASSISTIVE TECHNOLOGY RESOURCE CENTER IN YOUR STATE
State Assistive Technology (AT) Act Programs work to improve access to assistive technology for individuals with disabilities through comprehensive statewide programs. These programs include device loans, AT reuse, device demonstrations and state financing activities. To find an AT program in your state go to http://www.ataporg.org/atap/index.php. For a listing of AT manufacturers and distributors in your state visit http://www.abledata.com/
 
REFERENCE POINTS is administered by PACER Center http://www.PACER.orgas a technical assistance activity of the TATRA Project. The TATRA Project is funded by the Rehabilitation Services Administration.
To SUBSCRIBE to REFERENCE POINTS go to http://www.pacer.org/tatra/list/index.asp

 Autism / Asperger’s:

New York State Site is `one stop shop' for information on Autism and Autism Spectrum Disorders:http://www.nyacts. org 

The Cody Center for Autism and Developmental Disabilities:  

http://www.stonybrookmedicalcenter.org/codycenter/

Online Asperger Syndrome Information & Support (OASIS)

http://www.udel.edu/bkirby/asperger/

 Autism Speaks:   http://www.autismspeaks.org

General Information:

LD Online www.ldonline.org

LD Online In Depth:  http://www.ldonline.org/indepth

National Association for the Education of African American Children with Learning Disabilities:  http://www.aacld.org 

The National Center for Learning Disabilities (NCLD) www.ncld.org

National Dissemination Center for Children with Disabilities (NICHCY):

English: http://www.nichcy.org/index.html

Spanish: http://www.nichcy.org/spanish.htm 

Rick Lavoie – Articles: http://www.ricklavoie.com/articles.html

 Reading Research & Dyslexia:

Florida Center for Reading Research www.fcrr.org
Summary Table of Supplemental & Comprehensive Reading Programs 
http://www.fcrr.org/FCRRReports/CReports.aspx?rep=supp
 
From the Institute of Education Sciences at US Department of Education 
What Works Clearinghouse http://ies.ed.gov/ncee/wwc/reports/beginning_reading/topic/tabfig.asp

International Dyslexia Association: http://www.interdys.org/ 

Long Island Dyslexia Association: http://www.lidyslexia.org/

More Important Links and Resource Information:

http://www.3villagecsd.k12.ny.us/district/PPS/Procedural%20Safeguards%20Notice%20to%20Parents.pdf  NYS Education Dep. Procedural Safeguard Notice-Rights for Parents of Children with Disabilities Ages 3 -21 years

www.wrightslaw.com  Updated Outlines and Summations of IDEA 2004 Reauthorization and No Child Left Behind 2001, written for the special needs parent; What you need to know, Comprehensive Guides on how to arrange for Special Services; Eligibilies, Evalulation, Reevlauation Procedures, CSE Meetings, IEP Requirements, Numerous and Multiple Important Cross References

www.nimh.nih.gov       The National Institute of Mental Health (NIMH) iIs the largest scientific organization in the world dedicated to research focused on the understanding, treatment, and prevention of mental disorders and the promotion of mental health.

www.ada.gov    The Americans with Disabilities Act

www.theliac.org  The Long Island Advocacy Center: The Long Island Advocacy Center, Inc. (THE LIAC) is a private not-for-profit agency
dedicated to protecting the legal rights of students and individuals with disabilities

http://www.suffolkcountyceliacs.org/Index.htm  Suffolk County Celiacs

http://www.ener-g.com/ Foods/Recipes for Diet Restrictive Individuals

http://www.fcstonybrook.com/  Friendship Circle

http://www.tsa-usa.org/  Tourette Syndrome Association

http://www.dsafonline.org/  Down Syndrome Advocacy Foundation

http://www.epilepsyfoundation.org/longisland  Epilepsy Foundation

http://www.ocfs.state.ny.us/main/cbvh/  NYS Commission for the Blind & Visually Impaired

http://www.fvkasa.org   Kids As Self Advocates (KASA) is a national, grassroots project created by youth with disabilities for youth. We are teens and young adults with disabilities speaking out. KASA knows youth can make choices and advocate for themselves if they have the information and support they need.

http://www.legacyofloveplan.com/  Legacy of Love: Providing wealth management and life planning services for affluent families with members on the autism spectrum

507_08-12_Interim_Report.pdf   Attached is the Interim Report for the OMRDD Statewide Comprehensive Plan: 2008-2012. 

Appropriate School Accomodations LIST_OF_APPROPRIATE_SCHOOL (see attachment on this page)


Parent to Parent of NYS

New York's Family to Family

Health Care Information and Education Center

Links Digest- Volume 91 December 1, 2009

As part of the Family to Family Health Care Information and Education Center, Parent to Parent of NYS has established the Links Digest to provide links relevant to the issues of health care. Below is the most recent listing of website links which we have found valuable and hope they will be of benefit to others.

The Healthy People 2020 objectives have been released and through December 31, 2009 the opportunity for public comment exists. The link that follows will allow you to view the objectives in the various topic areas, including Disability & Secondary Conditions, and also make a public comment if you so choose. Additionally, we at Parent to Parent of NYS would welcome your feedback and comments regarding the Healthy People 2020 objectives. Anything that you would like to share with us can be forwarded to Michele Juda at http://www.healthypeople.gov/HP2020/Objectives/TopicAreas.aspx

1. Advocacy 101 - items that help strengthen advocacy skills -
(Communication skills, parenting skills, letter writing, speaking with professionals, asking questions)

From the CDC, tips on how to assure health and wellness for people living with disabilities:
http://www.cdc.gov/Features/Disabilities

This "Communication Emergency Kit" offers a one page reminder of how to communicate to achieve conflict resolution:
http://nysccc.org/advocacy/advocacy-basics/communication-skills/communication-emergency-kit/

2. Financing issues - health insurance and other ways to finance the costs of needed services (including grievances, denials and appeals - i.e. Strategies for Appealing Health Plan Decisions)

From the Developmental Disabilities Planning Council, a brief overview of financial assistance offered through the NYS Office of Temporary and Disability Assistance (OTDA). Information on free or low-cost health insurance options is also included:
http://ddpcmonthlyupdate.us/archive/2009/november/11_09_assistance.php

A glossary of managed care terms and their definitions:
< ai_n31481907 is_3_129 mi_qa3673 articles p findarticles.com>

This Parent Advocacy Brief from National Center for Learning Disabilities explains the impact the ADA Amendments Act of 2008 had on Section 504 of
the Rehabilitation Act of 1973:
http://www.ncld.org/images/stories/Publications/AdvocacyBriefs/UnderstandingADAAA-Section504/UnderstandingADAAA-Section504.pdf

4. Who helps with what? Which state agencies are involved in health care and health coverage? What do medical and managed care terms mean? What should families look for in selecting a provider? What questions should families ask?

The Health and Nursing Services Resource Center was recently launched to provide web-based information related to health services at OMRDD:
http://www.omr.state.ny.us/health/index.jsp

Medicaid Buy-in information for working persons with disabilities in NYS:
http://www.health.state.ny.us/health_care/medicaid/program/buy_in/index.htm

5. Parent-to-parent support skill-building (How can parents provide support and assistance to families without substituting their judgment? Understanding and respecting cultural diversity. How can parents be culturally competent in working with diverse families? How can parents emotionally support, inform, and educate parents so that they are strong, knowledgeable, and confident in caring for their child with special health needs?)

"You Are Not Alone: For Parents When They Learn That Their Child Has a Disability" is a good article whether this is new or you need a "refresher" course on parenting a child with special needs:

http://www.kidsource.com/NICHCY/parenting.disab.all.4.2.html

The following link reminds us that siblings of children with special needs are special too:
http://www.childrentoday.com/articles/special-needs/siblings-are-special-too-4268/

6. Keeping Records is a learned skill. Parents will learn what kinds of records are important and how to record necessary information. Your child's health care providers rely on your records to help them make sound medical recommendations.

Health Summary for your child with special health needs from NYS Department of Health:
http://www.health.state.ny.us/community/special_needs/docs/health_summary.pdf

NYS physicians and pharmacies will be offered incentives for the use of electronic prescriptions effective January 1, 2010, subject to CMS approval. The incentives are explained here:

http://www.health.state.ny.us/health_care/medicaid/program/update/2009/2009-11spec.htm

7. Parent-professional collaboration strategies. How can families work with their health care provider to secure quality care and coverage for their child? How can health care provider and families communicate more effectively? What are effective health advocacy strategies? What is a "medical home" and how can parents access it for their child with special health needs?

The Patient-Centered Primary Care Collaborative has issued "A Collaborative Partnership: Resources to Help Consumers Thrive in the Medical Home":
http://pcpcc.net/files/ConsumerGuidelines_0.pdf

Suggestions and excerpts from "The Seven Challenges Workbook- A Guide to
Cooperative Communication Skills for Success at Home and at Work":
http://www.newconversations.net/communication_skills_workbook_summary_and_toc.htm

8. Understanding Medicaid funded Waiver Services (Including the philosophy of individual and family-centered supports)

Questions and Answers on Medicaid from "Navigating Medicare and Medicaid, 2005: A Resource Guide for People with Disabilities, Their Families, and Their Advocates" provided by Kaiser Family Foundation:
http://www.kff.org/medicare/7240/medicaid.cfm#a5

The CDC recently issued this H1N1 flu guidance for people with disabilities and their caregivers or personal assistants. It discusses that those who provide health-related home and community-based services or support services in day and residential programs for people with disabilities should be considered in the same risk group as "health care workers", which would put them in a priority group for vaccination:
http://www.cdc.gov/h1n1flu/disabilities/

9. Legal information - what are the rights of children to medical coverage under Medicaid, SCHIP, fee-for-service coverage. How can families use complaint, arbitration, and grievance procedures to resolve disputes? What are the legal obligations of schools to provide health-related services and therapies?

Read the details of NYS Senate Bill 3773 which addresses the conflict between New York's Timothy's Law and the federal Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008. The federal law which applies to group health plans for plan years beginning after October 3, 2009 does not offer the same level of protection regarding mental health services as compared to Timothy's Law:

http://open.nysenate.gov/openleg/api/html/bill/S3773

The Office for Civil Rights provides information on the obligation of postsecondary schools to provide auxiliary aids and services to qualified students who have disabilities under Section 504 and Title II of the ADA, including examples of different types of auxiliary aids and services:
http://www.ed.gov/about/offices/list/ocr/docs/auxaids.html

10. Transition from Pediatric to Adult Health Care and Self Determination in Health Care (the important leadership role that individuals with disabilities and their families must play in moving from pediatric to adult health care).

From the NYS Department of Health, "Getting the Health Insurance You Need: A Fact Sheet for Teens and Young Adults":
http://www.health.state.ny.us/publications/4989.pdf

"Opening Doors to Self-Determination Skills: Planning for Life after High School" is a handbook developed by the Wisconsin Department of Public Instruction:

http://dpi.wi.gov/sped/pdf/tranopndrs-self-determination.pdf

11. Fathers - from Jim Swart, Fathers Network Coordinator

Inclusion of people with a disability is an important topic, but unless you have someone in your life with a disability it may be something you rarely think about. This was the case for Dan Habib before his son, Samuel, was born with Cerebral Palsy. Mr. Habib shot this documentary chronicling the Habib family's hard work to include Samuel in their everyday lives:
http://www.pbs.org/parents/inclusivecommunities/independence.html

Parents who have a child with special needs face many challenges. Military families who have a child with a disability face additional challenges (family member in harm's way, frequent moves, deployments, etc…). STOMP, Specialized Training of Military Parents, is a federally funded program that offers support to military families. This link provides information on this project:
http://www.oneplaceforspecialneeds.com/main/library_surviving_holidays.html

The U.S. Department of Education has issued guidance regarding waivers and flexibility available to schools that will not be in compliance with federal regulations due to closures necessitated by the H1N1 pandemic flu. It is lengthy and covers a variety of educational settings, but pages 4 through 7 are of note since they deal with children with special education services and disruption of those services due to a potential school closing:
http://www.ed.gov/admins/lead/safety/emergencyplan/pandemic/guidance/flexibility-and-waivers.doc
Find a flu vaccine near you with this county-specific vaccine locator:
http://www.flu.gov/individualfamily/vaccination/locator.html?WT.mc_id=fluLocator_Nov09&WT.mc_ev=click

? Have you found valuable links that you would like to share?
Please send them to Michele Juda at <>

v our website at www.ahaNY.org
PatS@ahaNY.org

Save the Dates!
*AHA's 10th Annual Spring Conference
Saturday, May 1, 2010, Adelphi University
John Elder Robison, keynote

Not a member of AHA? Join AHA today and receive our newsletter and discounts for AHA conferences and workshops. Your membership will help ensure that AHA is here to answer your questions and provide support to and referrals for individuals with AS/HFA and related conditions and their families. To join AHA, go to http://www.ahany.org/ab_app.htm

Learning Disability Resources

A learning disability is considered a classification and includes several disorders in which a person has difficulty learning in the normal manner. Learning disabilities are caused by an unknown factor and this factor or factors affect the brain's ability to process and receive information.

"Different Types of Learning Disabilities"
http://www.disabledtravelers.com/different-learning-disabilities.htm

http://www.1800wheelchair.ca/news/post/learning-disability-resources.aspx

http://www.know-the-ada.com/t1/parent-teacher-guide.html

Reading Disorders

Dyslexia – A resource page on Dyslexia featuring articles, multimedia, questions and answers, and recommended books.

Reading Comprehension – An article discussing learning disabilities as they relate to reading comprehension.

Reading Disorders – An article with information on the physiology of various reading related learning disabilities

Writing Disorders

Dysgraphia – Information on the Dysgraphia, a learning disorder that affects ones writing abilities including poor handwriting and trouble getting thoughts onto paper.

Language Based Disorders – Some information and resources on language based learning disabilities which tend to manifest in writing.

Writing Disorders – A list of resources and information on various learning disabilities related to writing.

Math Disorders

Math Learning Disorders – An article about research done by the Mayo Clinic that proves math learning disorders are fairly common.

Dyscalculia Resource – A list of resources with further information on math related learning disabilities.

Dyscalculia – Information on math learning disabilities including diagnosis, remediation, research, and more.

General Learning Disability Resources

LDANATL – The website of the Learning Disabilities Association of America.

NCLD – The website of the National Center for Learning Disabilities.

Learning Disabilities in Kids – Information on learning disabilities in children including causes and how to know if you have a disability.

Disabilities in Children – Information on learning disabilities such as symptoms, types, and testing options.

Learning Disabilities – Information from the National Institute of Neurological Disorders and Stroke.

What Are Learning Disabilities – A compilation of information on diagnosis, types, and how to cope with learning disabilities.

About Learning Disabilities – Information on learning disorders from the Child Development Institute.

Disabilities and Social Skills – An article discussing how adults social skills are affected by their learning disabilities.

Learning Styles – A learning style test along with information on how to make that style work for you.

Learning Disorders – Information and resources to help in the understanding of learning disabilities.

Learning Disorders in Adults – A list of resources for adults with learning disorders from the National Institute for Literacy.

Child Learning Disabilities – Facts for families on learning disabilities in children from the American Academy of Child and Adolescent Psychiatry.

Learning Problems – A site specifically for children to educate themselves on learning disabilities.

Screening for LD – Provides information on screening tests for learning disabilities.

 

Also: Download Several Resource Directory Guides Attached

Please Note:

Links to other Web sites are provided solely for the user's convenience and have no affiliation with Three Village SEPTA. As such, Three Village SEPTA  is not responsible for any information, facts or opinions contained on any of these sites.



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