Living With Autism – Support Groups

Autism Through The Lifespan

  • In our culture, autism spectrum disorder is often thought of as a childhood condition, with public attention focused primarily on children and the importance of early detection and intervention. However, autism is a lifelong condition, and the available, necessary supports and treatments change as people on the spectrum move through major life phases. With the rising diagnostic rate at 1 in 68, society must accommodate the pressing need for supports and programs for people on the spectrum across the lifespan.

    Like everyone else, people with autism move through significant life changes. Their quality of life depends not only on the foundation provided in childhood, but also on ongoing supports that are specific to their educational, medical, social, recreational, family and employment needs.

    The Autism Society WNY Chapter is a mostly volunteer organization.    We  provide two support groups that meet once a month, one for the Northtowns and one for the Southtowns,   We hold twice yearly workshops and provide  information and referral through the three critical stages of life to  people with autism and their families and the professionals who work with our children.

    Early Detection and Intervention
    The Autism Society WNY Chapter believes in  the importance of  early identification and access to effective treatments before age 3. Autism behaviors can become apparent as early as 18 months, and parents should investigate as soon as they suspect autism or another developmental issue. Early diagnosis of autism can reduce lifetime care costs by two-thirds, as it allows parents, therapists and others to begin treatments sooner. Learning as much as possible about autism and it’s community is important at this stage.

    Building a Strong Foundation from Childhood through Adolescence
    The Autism Society WNY Chapter provides information and referral to  parents and caregivers building  treatment and educational programs so that all children and adolescents can reach their fullest potential. At this stage, it is important to understand how the school system can help (for example, through an Individualized Education Plan) and how to prepare for the transition to adult life.

    A Life of Happiness and Dignity
    The Autism Society WNY Chapter believes that  every adult with autism should have access to services and supports that maximize independence and secure the highest quality of life possible.  For some, employment and living in the community are goals to pursue during adulthood.   For others, being in a safe and fulfilling environment both at “home” and in the community is a goal.   Self-advocacy is also important to many people on the spectrum, as more people with autism are speaking out about their experiences, identities and needs.

    Autism Through The Lifespan:

    • Navigating service
    • Behavior Interventions
    • Biomedical Treatments
    • Education Advocacy
    • Self Advocacy
    • Family Resources

Local Support Groups

     
    Autism Society of WNY Support Meetings
    North towns Meeting:  10:00 a.m. – Noon
    Location: Sweet Charlottes, 10255 Main Street, Suite 9, (Corner of Shisler and Main), Clarence, NY.
    No meetings in July and August and December                                                                                                     Southtowns Meeting: 10:00 a.m. – Noon
    Location: Sandy Crawford’s House in East Aurora , call 716-633-2275 or 352-1512 for location.                                     No meetings in July and August and December
    Parent Support Coffees are held twice per month, once in the Southtowns and once in the Northtowns. The parent Support Coffees are designed so that parents can talk to other parents in a comfortable environment.    Sweet Charlotte’s has a play area for toddlers.   Watch them play while you talk with other moms.  
    Contact Info: For more information call the office at 716-633-2275 or 352-1512 or email info@autismwny.org. Check EVENTS page at www.autismwny.org for times and dates of Parent Support Coffees.
     

    OTHER BUFFALO AREA SUPPORT GROUPS 

    Grand Island Autism Support Group
    Meeting Time:  First Tuesday of the month, September – June.6:30 p.m. – 8:00 p.m.                                                                                                                                                      Location:  Realty USA, 2139 Grand Island Blvd, Grand Island, NY 14072
    Peer-Run support group. Come and meet other families that are affected by Autism. We want to share ideas and experiences, vent about the brick walls we’ve hit, and most importantly realize that we are a growing community and that we are not alone.
    Contact Info:
    Contact Vienna at 716-430-5118 or GrandIslandNYAutismGroup@gmail.com for more information and to RSVP to attend. Visit Facebook page at www.facebook.com/GrandIslandNYSupportGroup.

    Parent Group for Parents of Children with ASD
    Children’s Guild Parent Support Group
    Meeting Time/Dates:
    Meets Monthly on Wednesday from 6:30 pm – 8:30 pm  2017 Schedule: February 15, March 15, April 19, May 17, June 14, July 19, August 16, Sept 13, Oct 18, Nov 15 and Dec 13 .  Please check local TV stations for cancellation info.
    Location:
    Aspire Building, 7 Community Drive, Cheektowaga, NY 14225
    To provide a welcoming environment for parents and other caregivers of children with autism spectrum disorders to meet, share experiences, ask questions and receive support. Moderated by Kathy Ralabate Doody, PhD, a parent of a child with autism, Instructor, Exceptional Education at Buffalo State; and Jana Mertz, MBA, Program Coordinator, The Children’s Guild Foundation Autism Spectrum Disorder Center Women’s and Children’s Hospital of Buffalo. Brought to you by: The Children’s Guild Foundation, Autism Spectrum Disorder Center, Women and Children’s Hospital of Buffalo and CASE: Center for Autism Support and Education.                     If you are interested in attending but have transportation or other barriers that would limit your participation, please let us know.
    Contact Info:
    For more information about the support group or to RSVP to the meetings, please call (716) 878-7600 or e-mail jmertz@kaleidahealth.org.  Sign up on line so we have enough materials available www. tiny url.com/ausomegroup
    FREE to attend Space is limited so reservations are greatly appreciated. Call 716-878-7600

    Niagara County Parent Group for Parents of Children with Autism Spectrum Disorders
    Meeting Time/Dates:
    Meets on the 1st Monday of each month from 6:30 p.m. – 8:00 p.m. .Light refreshments will be served.     Scheduled Feb 6, March 6, April 3, May 1, June 5, July 3, August 7, October 2, November 6 and December 4, 2017   Please check local TV stations for cancellation info.
    Location:
    Empower Children’s Academy, 9812 Lockport Road, Niagara Falls, NY 14304
    Provides a welcoming environment for parents and other caregivers of children with autism spectrum disorders to meet, share experiences, ask questions and receive support. Moderated by Kim Newton, Licensed Master Social Worker, Empower Children’s Academy  and Patrick Harnden, Qualified DD Professional, Parent Network.   Childcare available.   Reservations for childcare are required a minimum of 1 week in advance.   Registration forms are required for all new children and are available at www.parentneworkwny.org or by calling 332-4170.
    Contact Info:
    RSVP to attend www.parentnetwork.org or (716) 332-4170 .  FREE to attend – all are welcome but reservations are appreciated. . If you are interested in attending but have transportation or other barriers that would limit your participation, please let us know.

    Group for Parents of Teenagers with Autism Spectrum Disorders
    Meeting Time/Dates:
    Meets on Tuesdays each month 6:00 pm – 7:30 pm. Light dinner will be served.    Scheduled dates in 2017  Feb 9, March 9, April 13, May 11, June 8   Please check local TV stations for cancelation info.  Location: Wegman’s Cafe-                                                                                                                                   Back Conference Room, 601 Amherst St, Buffalo, NY 14207
    Provides a welcoming environment for parents and other cargivers of children with autism spectrum disorders to meet, share expreiences, ask questions and receive support. All are welcome to attend but group is geared towards parents of teenagers who may be transitioning to higher education, employment  and/or independent living.   Moderated by Tonia Weichmann, Transition Coordinator, Parent Network of WNY and Jana Mertz, MBA Program Coordinator The Childeren’s Guild Foundation Autism Spectrum Disorder Center, Women & Children’s Hospital of Buffalo.  A Group for Teens with Aspergers will be available at the same time with prior registration.    Please contact Jana Mertz at 878-7217 or jmertz@kaleidahealth.org for more info.
    Contact Info:
    All are welcome but reservations are appreciated. For confirm dates and/or questions please call (716) 878-7600 or email jmertz@kaleidahealth.org. If you are interested in attending but have transportation or other barriers that would limit your participation, please let us know.

    Families Child Advocacy Network Discussion Group (Buffalo)
    Meeting Time:
    Meets the 2nd Monday of the month from 6:30 p.m. – 8:00p.m.                                                                  Location:
    Families CAN/Compeer Office, 135 Delaware Avenue, Suite 210 (Corner of W. Mohawk), Buffalo, NY 14202
    Park for free on Delaware Avenue or West Mohawk.
    The Families Child Advocacy Network would like to extend an open invitation to parents, caregivers, foster, parents, grandparents and other family members raising children with special social, emotional, or behavioral needs to join us at our monthly roundtable discussions. Share your experiences to help create a better system for children and families. Learn what resources are available to get the help you need.
    Contact Info:
    For more information about the support group or to RSVP to the meetings, please call (716) 884-2599.  Respite care is available with 1-week notice prior to Roundtable meeting. If you will be bringing children, you must call Debbie at 884-2599, with the number and ages of the children, that will be attending.

    DDAWNY Family Committee
    Meeting Time/Location:
    Need to call (716) 877-7077  or check  Web site ddawny.org for dates.  Meets monthly at Aspire of WNY , 7 Community Drive, Cheektowaga, NY 14225
    DDAWNY Family Committee Focus: Advocacy and living options for individuals with DD. A support group to inform family members about the rights, protections, services and options available for their loved one with developmental disabilities(DD). Their purpose is to provide individuals with DD a range of choices for their living opportunities and to help family members become effective advocates.
    Contact Info:
    Contact: (716) 877-7007; www.ddawny.org; Facebook: DDAWNYFamily Committee Focus: Advocacy and living options for individuals with DD or email ddawnyfamilycommittee@gmail.com

    Southtowns Roundtable Meeting – Family support (Hamburg)
    Meeting Time:
    Meets the 1st Tuesday  of the month from 6:00 p.m. – 8:00 p.m.                                                                        Location:
    Wesleyan Church of Hamburg, 4999 McKinley Parkway, Hamburg, NY 14075
    (Door 5, Lower Level Room 11)
    In cooperation with The Families Child Advocacy Network would like to extend an open invitation to parents, caregivers, foster, parents, grandparents and other family members raising children with special social, emotional, or behavioral needs to join us at our monthly roundtable discussions. Share your experiences to help create a better system for children and families. Learn what resources are available to get the help you need.
    Contact Info:
    Run by Mental Health Association of Erie County.  For more information about the support group or to RSVP to the meetings, please call (716) 886-1242 ext. 313
    Child care is available, but you must RSVP at the above number ahead of time.

    Family Support Group (Buffalo)
    Meeting Time:
    Meets 1st Friday of each month 6:00 p.m. – 7:30 p.m.
    New Location:
    St. Mary’s School for the Deaf, 2253 Main Street, Buffalo, NY 14214
    This is an open invitation to parents, caregivers, foster, grandparents and other family members raising children with special social, emotional, or behavioral needs to join us at our monthly family support group. There is a bilingual facilitator for those who speak Spanish. Share your experiences to help create a better system for children and families. Learn what resources are available to get the help you need.
    Contact Info:
    Contact: 886-1242 Ext. 313

    Bornhava Support Groups
    Meeting Time:
    Call contact person for WOW Moms or Men’s Forum for meeting dates and times.
    Meets at Bornhava, 25 Chateau Terrace, Amherst, NY.
    Evening groups meet once a month throughout the school year, Oct. – May. Most parents have children birth-5 years old. They have two groups, WOW Moms and Men’s Forum.
    Contact Info:
    Contact Ann Lindmann-Czajka at 716-839-1655 for WOW Moms and contact Ellen Crawford at 716-839-1655 for Men’s Forum.

    Faith-Based Special Needs Parent Support Group
    Meeting Time:
    Meets the 2nd Thursday every month from 6:15 p.m. – 7:45 p.m.
    Location:
    Kenmore Alliance Church, Room 303, 175 Bonnett Ave., Tonawanda, NY 14150
    Gather with other moms and dads who understand what you’re experiencing, regardless of your child’s diagnosis. This group supports and encourages one another as they pray together and share resources. They also look at what the Bible has to say about our kids and our role in their lives.
    Contact Info:
    For information, contact:
    Phil & Shannon Welty at 417-3042 (text/call) or e-mail smwelty@gmail.com

    SIBLING SUPPORT

    WNY Sibshop at Canisius College
    Meeting Time:
    Location:
    Canisius College
    Sibshop provides support and guidance to siblings of children with developmental needs. Sibshops are lively, action packed 4 hour workshops that celebrate the many contributions made by brothers and sisters of children with special needs. For ages 6 – 12. Cost $20 for first child, $15 for each additional child. They also have a library for siblings.  There is a recently formed group for teens.
    Contact Info:
    Pre- Registration is required. For a registration form and more information contact Dr. Susan Putnam at 716-888-2895 or putnams@canisius.edu.

    INDIVIDUALS WITH ASD 

    Asperger’s/HF Autism Support Group
    Meeting Time:
    Meets the first Thursday of every month in the evening.
    Meeting location varies. Contact Veronica for details about time and location.
    A support group for adults with High Functioning Autism or Asperger’s Syndrome.
    Contact Info:
    For more information including time and location, contact Veronica Federiconi at 716-631-5777 ext 318 or vfedericoni@autism-services-inc.org.

    20 Something Group – ages 18 and up
    Meeting Time:
    Meets the 3rd Friday of each month from 6:00 p.m.-7:30 p.m. Parent group meets at the same time in a separate room.
    New Location:
    St. Mary’s School for the Deaf, 2253 Main Street, Buffalo, NY 14214
    A social support group for young adults 18 years of age and up. Parent group meets at the same time in a separate room. A peer run program within the Mental Health Association (MHA) of Erie County, Inc. focuses on issues affecting families who have a family member that has an emotional, behavioral, or mental health challenge.
    Contact Info:
    Childcare is available. Must RSVP at (716) 886-1242 ext. 313. Indicate number of children requiring childcare.

    Teen Peer Support Group – ages 13-18
    Meeting Time:
    Meetings are held on the 1st and 3rd Friday of each month from 6:00-7:30 p.m. Parent group meets at the same time in a separate room.
    New Location:
    St. Mary’s School for the Deaf, 2253 Main Street, Buffalo, NY 14214
    This youth & teen peer support group is run by the Mental Health Association of Erie County, Inc, and is open to youth between the ages of 13-18. This group gives teens the opportunity to connect with peers to discuss and explore pathways to recovery. The group offers a safe place for youth to receive support as well to celebrate accomplishments and practice self-care skills under the facilitation of a Youth Peer Mentor.
    Contact Info:
    For questions, contact Jenny Laney @ 716-886-1242 Ext. 313  Erie County Mental Health Association
    laney@eriemha.org

    Buffalo Aspies Meetup Group
    Meeting Time:
    Meets monthly.   Contact yadbyad@bjebuffalo.org or Cindy Mikulik at 716-204-5385 for dates and times .
    The Buffalo Aspies Meetup Group provides programming geared toward adult (18+) individuals with Asperger’s (or Aspies, as the community calls themselves). The group consists of those with Asperger’s, as well as neurotypical individuals, who come together to provide support and a safe place to work on developing friendships and social skills. Participation is free.
    Contact Info:
    Cindy Mikulik at 716-204-5385 or yadbyad@bjebuffalo.org

    AANE (Asperger/Autism Network) Online Support Groups
    Meeting Time:
    Varies. Go to AANE’s website.
    Members of AANE (Asperger/Autism Network) are invited to join one of AANE’s Online Support Groups: ANNE-Children-Parents Group; AANE-Teens-Parents Group; AANE-Spouse/Partners Group (for spouses/partners in relationship with adults with Asperger’s); ANNE-Divorced from/Co-Parenting with an Ex Group (for those who are coparenting with an ex partener with Asperger’s); AANE-Adults-Parents Group (for parents of adults with AS and related conditions); and AANE Granparent On-line Group.
    Contact Info:
    For information about the various online support groups go to http://aane.org/aane_services/aane_online_support_groups.html. For a direct link to AANE’s online support groups go to the Autism Society of WNY information page and scroll down to Asperger’s /HF Autism Resources. To become and AANE member go to http://aane.org/make_difference/aane_membership.html.

    ROCHESTER AREA 

    AutismUp (formerly know as UNYFEAT) – Rochester
    Meeting Time:
    See website for events and programs.
    AutismUp formerly known as UNYFEAT is a Rochester based group that provides parent support and information. They have a variety of programs including social skills programs for children and conferences.
    Contact Info:
    Phone: (585)248-9011 Website: http://autismup.org

    SPECIAL EDUCATION GROUPS – various districts  

    Local SEPTSA and SEPAC
    Meeting Time:
    Check websites or contact person(s).
    SEPTSA (Special Education Parent, Teacher, Student Association) and
    SEPAC (Special Education Parent Advisory Committee) Groups
    While not specifically for autism, they are another source of support and a great way to network with other parents in your school district. Call your school district to see if they have a SEPTSA or SEPAC.
    Contact info:

    Clarence SEPTSA: Karen Conway 716-741-3691 or LouAnn Nowicki 716-741-7065 www.clarenceschools.org
    Frontier SEPTSA: www.frontier.wnyric.org
    Williamsville SEPTSA: Dave Whalen 716-565-9338 or Judy Kemp 716-912-9104 www.williamsvilleseptsa.org
    Buffalo Public Schools SEPAC: Rosemary Arnone 716-816-4747


    OLEAN AREA 

    Olean Parent Group for Parents of Children with Autism Spectrum Disorders
    Meeting Time:
    Meets on the 2nd Monday of each month from 6:00 p.m. – 7:30 p.m., excluding July and August.
    Light refreshments will be served.Location: Trinity United Methodist Church, 131 N 9th Street, Olean, NY.
    Provides a welcoming environment for parents and other caregives of children with autism spectrum disorders to meet, share experiences, ask questions and receive support. Moderated by Christie Chesebro, MSEd, Autism Service Coordinator and Parent, The Guidance Center in Bradford, PA and Karen O’Dell, MSEd, BCBA Board Certified Behavior Analyst Autism Services Specialist and Parent, Olean City School District.
    Contact Info:
    All are welcome but reservations are appreciateed. Please call Karen: 716-307-9905 or email Peg: plk@parentnetworkwny.org. If you are interested in attending but have transportation or other barriers that would limit your participation, please let us know.

Starter Resources

    • ADVICE FOR PARENTS OF YOUNG AUTISTIC CHILDREN
      This paper is geared toward parents of newly diagnosed autistic children and parents of young autistic children who are not acquainted with many of the basic issues of Autism. The authors’ discussion is based on a large body of scientific research.
    • “WHAT IS AUTISM?”
      Information on the symptoms, diagnosis and causes of Autism Spectrum Disorders. This link also provides information on Asperger’s Syndrome & facts and statistics.
    • LIFE JOURNEY THROUGH AUTISM: A PARENT’S GUIDE TO RESEARCH
      This guide is the first in a series of planned publications that will examine and illuminate various aspects of living with Autism. This guide is a basic tool that will help you ask questions and investigate issues related to treatment for your child. You will need Adobe Acrobat Reader to download this resource.
    • CHILDREN’S GUILD AUTISM SPECTRUM DISORDER CENTER
      Located at Women’s and Children’s Hopital, the center takes a team-based approach to evaluation. During one visit, each child is seen by a developmental pediatrician, child neurologist, and child psychologist. After the visit, the team discusses the child and determines the diagnosis and/or need for any additional testing or services. The Center has a full time social worker and nurse and offers a monthly parent group, newly diagnosed sessions and information resources for parents of children diagnosed with an autism spectrum disorder. Contact: (716) 878-7600
    • NEW YORK STATE EARLY INTERVENTION PROGRAM
      The Early Intervention Program is a statewide program that provides many different types of early intervention services to infants and toddlers with disabilities and their families.
    • FIRST 100 DAYS – AUTISM SPEAKS
      The Autism Speaks 100 Day Kit is created specifically for newly diagnosed families, to make the best possible use of the 100 days following the diagnosis of autism. They also have a 100 day toolkit for Asperger’s and High Functioning Autism.
    • EARLY CHILDHOOD DIRECTION CENTER
      The ECDC provides free information, referral, technical assistance and support to families, professionals, and community agencies concerned with children birth to five with suspected or diagnosed delays or disabilities. Provides ongoing community training programs for both parents and professionals. Consider joining the ECDC information distribution list. This is an all inclusive list, this is not just autism information. Please send an email to ecdc@kaleidahealth.org and enter parent or professional in the subject line.
    • KIRCH DEVELOPMENTAL SERVICES CENTER, UNIVERSITY OF ROCHESTER MEDICAL CENTER
      Center Kirch Developmental Services Center is the primary clinical program of the Division of Neurodevelopmental and Behavioral Pediatrics. We provide services to children with developmental delays and disabilities such as autism, cerebral palsy, spina bifida, and intellectual disability. We provide evaluation of children who are suspected of having a disability. When children are known to have a disability, we provide specialized health care, monitoring their progress and paying extra attention to health and behavior challenges that go along with each disability. We provide specialized treatments for certain health and behavior challenges, like spasticity and feeding problems. We provide information and resources to families to help them get the right services or support in their community. Contact: (585) 275-2986
    • GUIDE TO UNDERSTANDING SUPPORTS AND SERVICES
      Administered by the New York State Office for People with Developmental Disabilities (OPWDD). The Guide was developed to inform families about the wide range of supports and services available to qualified individuals and to assist them in accessing those services for their loved one with a developmental disability.
    • TALK ABOUT CURING AUTISM (TACA)
      Talk About Curing Autism (TACA) provides information, resources, and support to families affected by autism. This website has extensive resources for starting the Gluten-Free Casein-Free Diet.
    •  DDAWNY 2015 Guide to Services
      This guide is intended to assist individuals, family members, community organizations and school district personnel who are seeking services and community supports to meet the needs of people with developmental disabilities.  http://www.ddawny.org/wp-content/uploads/2014/09/40680-Guide-to-services-NEWEST-WEB.pdf

    • Parent to Parent of New York State
      Parent to Parent of NYS supports and connects families of individuals with special needs. They provide the support and connection through their parent matching program; information and referral; and trainings.http://parenttoparentnys.org/offices/western/

    • Parent Network of Western New York
      A community resource for families of individuals with special needs and for professionals who work with these families. Parent Network’s goal is to empower families to successfully advocate for their children with special needs and to see that they receive proper care and education by offering seminars, workshops, conferences, information and referral services, and resources. http://parentnetworkwny.org

    • New Autism Speaks Sleep Strategies Guide
      This informational booklet is designed to provide parents with strategies to improve sleep in their child affected by autism spectrum disorders (ASD).  https://www.autismspeaks.org/science/science-news/new-autism-speaks-sleep-strategies-guide

    • Autism Spectrum Disorders Resources
      Women & Children’s Hospital of Buffalo has a collection of autism spectrum disorders resources. Some of the topics included in the list are haircuts, toilet training, medicaid waiver services and travel resources. Many of the local resources have been recommended to us by parents or other members of the community and listing the resources does not imply endorsement of any particular individual or service.  http://www.kaleidahealth.org/childrens/services/display.asp?pt=G&p=1256&s=680

    • Health Insurance Coverage for Adults with Developmental Disabilities
      “Any unmarried dependent child, regardless of age, who is incapable of self-sustaining employment by reason of mental illness, developmental disability, or mental retardation as defined in the mental hygiene law, or physical handicap and who became so incapable prior to the age at which dependent coverage would otherwise terminate, shall be included in coverage subject to any pre-existing conditions limitation applicable to other dependents.” N.Y. ISC. LAW § 3216 : NY Code – Section 3216: Individual accident and health insurance policy provisions

      If this applies to you, ask your current health insurance carrier for a form that you can fill out to document such disability and an inability to achieve “self-sustaining employment”.

      http://codes.findlaw.com/ny/insurance-law/isc-sect-3216.html

Safety Options

    • PROJECT LIFESAVER OF WNYHTTP://WWW.PROJECTLIFESAVERWNY.ORG/   The only law enforcement based tracking program in the world created for those prone to wandering is now available in Western New York. This program has a 100% success rate (with an average search time of less than 30 minutes) and is responsible for over 2,000 rescues of children with developmental disabilities (autism, Down Syndrome, mental retardation, etc.) and elderly people with Alzheimer’s and related disorders.
    • KEEP ME SAFE IDS  Keeping children with Autism safe is exactly what our customized QR Code Bracelets are all about. This unique lost child safety device protects personal information from the naked eye but can be easily scanned via smartphone to provide first responders and family with vital information when a child bolts and wanders.
    • BIG RED SAFETY TOOLKIT The Big Red Safety Toolkit is for a caregiver for someone with an Autism Spectrum Disorder (ASD) who is prone to wandering off from a safe environment, and whose diagnosis may interfere with their ability to recognize danger and/or stay safe.
    • FIRST RESPONDER TOOLKIT Some people with Autism Spectrum Disorders (ASDs) are prone to wandering away from a safe environment and may have little ability to recognize danger and/or stay safe. The National Autism Association is committed to providing direct aid and support to those at risk and have created a toolkit which contains tools and resources for First Responders.
    • AUTISM AND WANDERING: A DANGEROUS COMBINATION   Article: When Liane Kupferberg Carter’s son Mickey began “escaping,” as she calls it, around age 2, “he was greased lightning,” she says. “I couldn’t take my eyes off him for an instant or he’d disappear—in malls, supermarkets, or in any public space.”
    • HOME AND COMMUNITY-BASED SERVICES WAIVER (OPWDD)  OPWDD administers this HCBS Waiver. It is OPWDD’s primary funding mechanism for supporting individuals in the community by providing a variety of services and supports that are uniquely tailored and individualized tomes each person’s needs. These services can include habilitation services, respite care, service coordination, and adaptive technologies. Services are provided either by OPWDD’s Developmental Disabilities Services Office (DDSO) staff or through voluntary not-for-profit agencies who have been authorized to provide HCBS waiver services by OPWDD or the NYS Department of Health.
    • ENVIRONMENTAL MODIFICATIONS (E-MODS)  E-Mods are physical adaptations to the home that can increase or maintain the individual’s ability to live at home with independence. Environmental modifications include, but are not limited to, ramps, lifts, hand rails, bathroom modifications (such as roll-in showers). In addition to these physical types of modifications to the home, E-Mods can include modifications that address the individual’s sensory deficits, such as Braille identifications systems and strobe light smoke detectors and alarm devices, and modifications that promote a safer environment for individuals with challenging behaviors, including window protection, reinforcement of walls, open-door signal devices and durable wall finishes. To be eligible for Environmental Modification services through OPWDD, the individual must be enrolled in the Home and Community-Based Services Waiver or the CAH Wavier.
    • ASSURANCE WIRELESS  If you qualify and are approved for the program, you’ll get a FREE Assurance Wireless phone, 200 FREE minutes of wireless service each month for local and long distance calling within the U.S., and more. You may qualify if you receive state or federal assistance. See website for details.
    • MEDICALERT FOUNDATION   With a MedicAlert medical ID, emergency responders, police and good Samaritans can quickly identify missing people and connect them with MedicAlert’s 24/7 call center to reunite them with loved ones and make sure they receive the emergency care they need.