Resources and Links
For Medicaid Service Coordination resources, please visit the Advanced Care Alliance.
For information on People First Care Coordination, please click the image to the left.
Disability Rights New York (DRNY) is the federally and state-authorized Protection and Advocacy System and Client Assistance Program (P&A/CAP) for people with disabilities in New York State.
DRNY provides legal and other advocacy services to advance and protect the rights of people with disabilities and to ensure that they are free from abuse and neglect and unlawful discrimination.
DRNY is required, on an annual basis, to create subject matter priorities for its programs and to solicit comments and suggestions about those priorities from people with disabilities and others throughout the state. Once finalized, these priorities will be a statement of where DRNY will focus its advocacy efforts and resources on behalf of people with disabilities during the next fiscal year. Click here or on the banner above to participate!
DRNY provides legal and other advocacy services to advance and protect the rights of people with disabilities and to ensure that they are free from abuse and neglect and unlawful discrimination.
DRNY is required, on an annual basis, to create subject matter priorities for its programs and to solicit comments and suggestions about those priorities from people with disabilities and others throughout the state. Once finalized, these priorities will be a statement of where DRNY will focus its advocacy efforts and resources on behalf of people with disabilities during the next fiscal year. Click here or on the banner above to participate!
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North Fork Therapeutic Riding Program-
a non-profit 501(c)(3) organization. Our program offers customized therapeutic riding lessons designed to help each individual reach their fullest potential. Riders of all ages and disabilities both physical and emotional are provided with opportunities to improve their lives. Click the link to find out more about the program at FoxRun Farm. www.NorthForkTripNY.org |
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Report to the Governor: Keep the Promise
Community-based housing for people with intellectual and developmental disabilities. Click HERE to read the document. |
Information on low income rural housing grants and opportunities through the USDA. Options for individual loans and housing development grants for the elderly, disabled, and low income residents.
Click Here for more information
Click Here for more information
L’Arche Long Island
is a community where people with and without intellectual disabilities live together as peers, As part of the worldwide L’Arche movement, we are committed to creating inclusive communities of faith and friendship, and to transforming society through relationships that cross social boundaries.
After a 4-year effort of love, commitment, and the diligent efforts of our Board of Directors and Friends of L’Arche, we have succeeded in opening our first home in Eastern Long Island! Our community is located in Riverhead’s very own Polish Town which has proven to be the perfect choice; it has a growing lovely downtown area and emerging developments with shopping, preforming arts theaters, and restaurants. Riverhead is the gateway to both the Hamptons as well as the wine country of Long Island.
L’Arche Long Island (LLI) and East End Disability Associates, Inc. (EEDA) began working together to plan the establishment of Long Island’s first L’Arche community, which will be one home, a community center, and several neighboring apartments. It is our goal to further develop our partnership with East End Disability Associates Inc. in order to offer educational and social activities that promote interactions between our members and the communities in which we live.
Our home has a total of seven bedrooms, and our residents are both people with and without developmental disabilities who live and share their lives together. Our Community Center is adjacent to the home and serves as a space for our community gatherings, prayer, and celebration. Our doors are always open to meet new friends within the community, whether for dinner, a game night, or just for a quick hello and cup of coffee.
is a community where people with and without intellectual disabilities live together as peers, As part of the worldwide L’Arche movement, we are committed to creating inclusive communities of faith and friendship, and to transforming society through relationships that cross social boundaries.
After a 4-year effort of love, commitment, and the diligent efforts of our Board of Directors and Friends of L’Arche, we have succeeded in opening our first home in Eastern Long Island! Our community is located in Riverhead’s very own Polish Town which has proven to be the perfect choice; it has a growing lovely downtown area and emerging developments with shopping, preforming arts theaters, and restaurants. Riverhead is the gateway to both the Hamptons as well as the wine country of Long Island.
L’Arche Long Island (LLI) and East End Disability Associates, Inc. (EEDA) began working together to plan the establishment of Long Island’s first L’Arche community, which will be one home, a community center, and several neighboring apartments. It is our goal to further develop our partnership with East End Disability Associates Inc. in order to offer educational and social activities that promote interactions between our members and the communities in which we live.
Our home has a total of seven bedrooms, and our residents are both people with and without developmental disabilities who live and share their lives together. Our Community Center is adjacent to the home and serves as a space for our community gatherings, prayer, and celebration. Our doors are always open to meet new friends within the community, whether for dinner, a game night, or just for a quick hello and cup of coffee.
Resources for Parents, Students, and Educators
22 Tips for Teaching Students with Autism Spectrum Disorders
50 Must-See Blogs for Special Education Teachers
The Ultimate Guide to Water Safety for Parents and Caregivers of Children with Autism
Teaching Your Child About Peers with Special Needs
22 Tips for Teaching Students with Autism Spectrum Disorders
50 Must-See Blogs for Special Education Teachers
The Ultimate Guide to Water Safety for Parents and Caregivers of Children with Autism
Teaching Your Child About Peers with Special Needs
Useful Links
- New York State Office for People with Developmental Disabilities (NYSOPWDD)
- New York State Developmental Disabilities Planning Council
- Parent to Parent of New York State
- Family Advocacy Center, Inc.
- Nassau/Suffolk Law Services Committee, Inc.
- Protection and Advocacy for Individuals with ID/DD (PADD)
- Centers for Disease Control and Prevention: Developmental Disabilities
- Autism Speaks
- Special Olympics New York
- Best Buddies New York
- Surfers Healing
- Social Security Disability Resource Center
- Self-Advocacy Association of New York State
- Cerebral Palsy Guide
- Autism and Safety- It's Unpredictable
- "START WITH YOUR STRENGTHS" - A RESOURCE FOR PARENTS
- Cerebral Palsy
- https://householdquotes.co.uk/sensory-overload/
Helpful Links from Parent to Parent of NYS:
Advocacy 101 – items that help strengthen advocacy skills –(Communication skills, parenting skills, letter writing, speaking with professionals, asking questions) What questions should you ask when selecting a surgeon for your child?http://health.usnews.com/health-news/best-childrens-hospitals/articles/2008/05/29/seeking-a-childrens-surgeon
What does extreme heat do to medications?http://www.nytimes.com/2011/08/16/health/16consumer.html?_r=1&ref=health
Health insurance consumers have certain rights and protections. Learn more about these protections here:http://www.healthcare.gov/using-insurance/understanding/rights/index.html
Meeting health needs at school (i.e. What are the legal obligations of schools to provide health-related services and therapies? What are 504 accommodations to assure equal access?) Fantastic series of articles from Parenting Children with Health Issues to help prepare for the return to school:http://www.parentingchildrenwithhealthissues.com/articles/article/4270854/161211.htm
Powerful insights for teachers on the experiences of students with special health care needs are found in this collection of student quotations so aptly titled “Tips for Teachers, the Blackboard Experts from Kids with Medical Problems, the Band-Aide Experts”:http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/teacher.html
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? A guide to understanding Medicaid Personal Care or Home Attendant Services from NY Health Access: http://wnylc.com/health/entry/7/
What is the Children and Youth with Special Health Care Needs Program in New York State?http://www.health.ny.gov/community/special_needs/
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?)
Deborah Phelps, Mom to Olympic athlete Michael Phelps, discusses Michael’s ADHD diagnosis in this interview with Good Housekeeping:http://www.goodhousekeeping.com/family/inspirational-people/deborah-phelps-interview
Military families face unique situations when dealing with deployments, pre and post deployment and integration into new communities. This website, sponsored by the American Psychiatric Association, offers information about coping with these unique stresses, including those affecting children of military families:http://healthyminds.org/More-Info-For/Military.aspx
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.An interesting discussion about who “owns” patient data on The Health Care Blog: http://thehealthcareblog.com/blog/2012/07/11/who-owns-patient-data/?utm_source=THCB+2.0&utm_campaign=ccf866e096-THCB_Reader_See_One_Do_One_Harm_One_7_23_2012&utm_medium=email
This New York Times blog entry discusses the anxiety associated with waiting for test results, offers questions to ask pre-test to assist with coping, and explores the potential impact direct access to test results might have : http://well.blogs.nytimes.com/2012/07/23/the-anxiety-of-waiting-for-test-results/
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?
How are medical schools preparing students to practice within medical homes?
http://www.ama-assn.org/amednews/2012/06/25/prl10625.htm
Families are using the internet to gather health information, follow the health experiences of others, and assess quality of care. Dr. Claire McCarthy from Boston Children’s Hospital suggests the need for an online doctor-family partnership:http://childrenshospitalblog.org/%E2%80%9Chealth-care-hackers%E2%80%9D-how-the-online-space-is-changing-health-care/?utm_content=sf5220690&utm_medium=spredfast&utm_source=twitter&utm_campaign=Social+admin&sf5220690=1
Understanding Medicaid funded Waiver Services (Including the philosophy of individual and family-centered supports)Some reaction to the Department of Health’s Super Waiver application:
The Long Term Care Community Coalition applauds the inclusion of funds to provide critical oversight during the implementation of mandatory managed long term care (see the August 6th entry):http://www.ltccc.org/MandatoryManagedCare.shtml
Medicaid Matters applauds the inclusion of new initiatives and funding to protect and enhance the interests of Medicaid consumers and the providers that serve them. They state the new initiatives will make a positive difference in access to care and include funding for advocacy assistance for people with disabilities and chronic illnesses who are newly enrolled in Medicaid Managed Care:http://www.empirejustice.org/assets/pdf/press-release/medicaid-matters-press.pdf
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?
This video clip from Kaiser Health News explains travel insurance for those with pre-existing conditions:http://www.kaiserhealthnews.org/Multimedia/2012/August/andrews-Q-and-A-travel-insurance.aspx
This article discusses several reasons to consider creating a Special Needs trust prior to a child turning 18:http://www.specialneedsanswers.com/resources/article.asp?id=6222§ion=4&st
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).
The UCLA Center for Mental Health in Schools provides these tips on Supporting a Successful transition to Ninth Grade:http://smhp.psych.ucla.edu/pdfdocs/practicenotes/transitionsninthgrade.pdf
This Got Transition brief describes decision-making supports that may assist young adults with intellectual disabilities while ensuring independence and self-direction. It includes links to important resources for more information about guardianship and other alternatives: http://hosted-p0.vresp.com/330372/c41b470f62/ARCHIVE
Fathers – from Jim Swart, Fathers Network Coordinator Learn more about NYS’ Dads Take Your Child to School program, which will take place on Thursday, September 20th:https://sites.google.com/site/dtyctsny/
The Florida Developmental Disabilities Council website offers, in English and Spanish, “First Steps: A Guide for Parents of Children with Developmental Disabilities”. This guide takes parents through early diagnosis, individual reactions, family adjustments, educational needs, etc. http://www.fddc.org/publications/first-steps
Other Links:
The Friendship Circle Blog offers 70+ tips and tricks to make traveling with your special needs child less stressful and more enjoyable: http://blog.friendshipcircle.org/2012/05/23/70-tips-and-tricks-for-special-needs-road-trips/
Save the Date: The Self Advocacy Association of New York State will hold its annual Statewide Advocacy Conference on October 25th, 26th and 27th at the Albany Marriott Hotel in Albany, New York:http://ddpcmonthlyupdate.us/stories/july_2012/SANYS%20Statewide%20Conference.html
Application for Services
To apply for services please download a universal service application by visiting our Application Download Center. Application is in PDF form. You will need Adobe Acrobat Reader installed in order to view application. To download Adobe Acrobat please click here.
Completed applications may be faxed to:
(631) 369-7346
Application Download Center
