ACT seeks to provide assistance for its Beneficiaries, their families and those that provide care or are responsible for their well being. Below are links to organizations and resources to assist you in reaching your fullest each day. ACT is not responsible for the services and support provided by these organizations but is simply providing these resources to assist you in your journey,
The following organizations were critical in establishing ACT in 2001. Each provide unique services and support to individuals with special needs. We recommend that you review each websites and see if they are able to assist you today.
Initial Sponsoring Organizations
Links to Additional Resources
ACT Workbook –
ACT is pleased to provide you and your family with a workbook to aid you in the planning for your child with special needs. This workbook is simply an aid to assist you and your family organize your thoughts and the various materials, contacts, resources and network to assist your child in the future.
Use this workbook as a guidepost to help you organize the important information you will need to draft a letter of intent. Once you complete the workbook, seek legal counsel from an experienced special needs planning attorney to assist you with drafting the letter. The letter should be periodically updated. It should also be shared with appropriate people, such as your child’s designated guardian.
Workbook – ACT Special Needs Workbook
ABOARD’s Autism Connection of PA
www.autism-support.org
“ABOARD’s Autism Connection of PA provides autism support across the state of Pennsylvania. We offer autism support to parents, including autism support groups, autism resources, and autism conferences and events. We also provide information on the signs and symptoms of autism, getting an autism diagnosis, and applying for medical assistance and health insurance. Finally, we help people with autism by providing information on autism treatments, links to autism research studies, and support groups for people on the spectrum.”
ABLE Account
PA ABLE Account Information
The “ABLE” account is a relatively new planning tool that offers an individual with disabilities a tax-free savings option (similar to a 529 College Savings Plan) that does not interfere with the individual’s eligibility for means-tested government benefits, such as Supplemental Security Income (SSI) and Medicaid. Special needs trusts (SNTs) are well-established savings tools that also protect eligibility for public programs.
Since the regulations governing SNTs and ABLE accounts are quite different, individuals with disabilities and their families should consider their specific circumstances before establishing one or the other. In some instances, it may be beneficial to create both. We are happy to discuss your options!
The Arc of Pennsylvania
www.thearcpa.org
“The Arc is the largest advocacy organization in the United States for citizens with cognitive, intellectual, and developmental disabilities, and their families. The Arc of Pennsylvania is the state chapter of The Arc. The Arc’s mission is to work to include all children and adults with cognitive, intellectual, and developmental disabilities in every community. We promote active citizenship and inclusion in every community.” Find you local chapter at:, http://www.thearcpa.org/who_we_are/local-chapters.html
ASCEND Group Inc., the Asperger and Autism Alliance for Greater Philadelphia
www.ascendgroup.org
A network of families and professionals serving individuals with ASD and related disorders. “Our mission is to raise public awareness about Asperger Syndrome and related disorders, to advocate for improved education and services, and to provide support and information to the Asperger and autism community.”
ASERT PA
www.paautism.org
“Pennsylvania’s Leading Source of Autism-Related Resources and Information.” ASERT aims to enhance the lives of Pennsylvanians with autism of all ages and abilities.
Autism Society of America – Greater Philadelphia Chapter
www.asaphilly.org
The Autism Society, the nation’s leading grassroots autism organization, exists to improve the lives of all affected by autism. We do this by increasing public awareness about the day-to-day issues faced by people on the spectrum, advocating for appropriate services for individuals across the lifespan, and providing the latest information regarding treatment, education, research and advocacy.
CaptionCall
www.captioncall.com
CaptionCall is a lot like getting captions on TV. With the CaptionCall phone, you can hear and read what the other person is saying. The CaptionCall phone displays big, easy-to-read text that automatically scrolls during your conversation Plus, you can amplify the sound to better hear your caller’s voice with superb audio quality. It dials, rings, and works just like a regular phone. CaptionCall does more than provide a helpful telephone and captioning service. We’re a professional team that wants you to have a great experience on the phone. Thanks to the Americans with Disabilities Act (ADA) and the Federal Communications Commission (FCC), funds are set aside to help people with hearing loss effectively use the telephone. CaptionCall is an FCC-authorized captioned telephone service provider and is compensated by the FCC for providing the captioning service. The Phone(s) and services are provided to you at no cost!
Disability Rights Network
http://drnpa.org
“Disability Rights Network of Pennsylvania (DRN) is a statewide, non–profit corporation designated as the federally–mandated organization to advance and protect the civil rights of adults and children with disabilities. DRN works with people with disabilities and their families to ensure their rights to live in their communities with the services they need, to receive a full and inclusive education, to live free of discrimination, abuse and neglect, and to have control and self–determination over their services.”
Down Syndrome Interest Group of Delaware County
www.delcodsig.org
“The Delaware County Down Syndrome Interest Group (DSIG) was formed in 1990 by a group of families touched by Down syndrome, and we are dedicated to advocating for the Down syndrome community. We are a passionate community.”
Education Law Center
www.elc-pa.org
“ELC is a non-profit legal advocacy and educational organization, dedicated to ensuring that all of Pennsylvania’s children have access to a quality public education.
“ELC’s mission is to ensure that all children with disabilities get the quality education critical for them to become independent and self-supporting adults.”
Kids Together
www.kidstogether.org
Kids Together is a parent-run all volunteer organization and website. “The goals of Kids Together, Inc. include a desire to remove barriers that exclude people with disabilities. They support the belief that children with disabilities, like all children, have the need to be welcomed, cherished and embraced in our communities.”
Liberty Resources, Inc.
http://www.libertyresources.org
Liberty Resources, Inc. is a not-for-profit, Consumer-controlled organization that advocates and promotes independent living for all persons with disabilities. As a Center for Independent Living (CIL), Liberty Resources advocates with disabled people, individually and collectively to ensure our civil rights and equal access to all aspects of life in the community.
Liberty Resources must provide four core services: Advocacy, Information and Referral, Peer Support and Skills Training. Click to read more about the core services. In addition to those, a CIL should respond to the unique needs of its community. Liberty Resources is one of the first Centers for Independent Living in Pennsylvania, and has been consistently able to add services to address the needs of our community. Read more about the other services that Liberty Resources has added to its menu.
Lehigh Valley Center for Independent Living
www.lvcil.org
LVCIL is a non-profit organization based in Allentown, PA that provides services and support to people with all types of disabilities.
At LVCIL, we believe that every individual has the right to live a healthy, happy, and productive life in a community that is free from all barriers. We can help you achieve or maintain your independence through many of our supportive services and programs, including our four core services: Information and Referral, Peer Support, Advocacy, and Independent Living Skills. In addition, we also provide specialized services, such as specialized housing search and support, services for Veterans, 24-hour sign language services, youth transition services, job coaching, supports coordination under several waiver programs, community education, and more.
Montgomery Down Syndrome Interest Group
www.mcdsig.org
The Montgomery County Down Syndrome Interest Group of Pennsylvania is a 501(c)(3) nonprofit organization whose mission is to provide support and resources for individuals with Down syndrome and their families in our community. MCDSIG seeks to broaden awareness, and gain acceptance and inclusion of people with Down syndrome.
PA Tourette Syndrome Alliance, Inc.
www.patsainc.org
“To identify, support the needs of, and advocate for individuals with Tourette Syndrome in Pennsylvania. To promote awareness through informational outreach and educational presentations.”
Parent to Parent of Pennsylvania
www.parenttoparent.org
Parent to Parent connects the families of children and adults with disabilities and special needs through peer to peer supporters.
Parenting Partners
www.familyleadership.org/parenting-partners
Parenting Partners teams present eight workshops multiple times year-round, in multiple languages, creating a sustainable cadre of parent leaders. Teams create a small dynamic group, bringing 10-20 parents at a time through the leadership workshops.
Pennsylvania Developmental Disabilities Council
www.paddc.org
The Pennsylvania Developmental Disabilities Council is a group made up of people with disabilities, family members, advocates, and state department representatives who work to create favorable conditions for people with developmental disabilities and their families in the Commonwealth. Created under a federal act and Governor’s Executive Order, the Council is both a planning group and a funding body.
PEAL Center
www.pealcenter.org
The PEAL Center is Pennsylvania’s parent training and information center serving Western and Central Pennsylvania. The mission of the PEAL Center is to ensure that children, youth, and adults with disabilities lead rich, active lives and participate as full members of their schools and communities by providing training, information, and technical assistance based on best practices to individuals, families and all people who support them.
PIAT
http://disabilities.temple.edu/programs/assistive/piat/
Pennsylvania’s Initiative on Assistive Technology (PIAT) strives to enhance the lives of all Pennsylvanians with disabilities, older Pennsylvanians, and their families, through access to and acquisition of assistive technology devices and services, which allow for choice, control and independence at home, work, school, play, and in their neighborhoods.
PIN – Parents Involved Network
www.mhasp.org/services/parents-involved-network-pin-delaware-county.html
A statewide organization that assists parents or caregivers of children and adolescents with emotional and behavioral disorders. Parents Involved Network provides support and advocacy to parents of children who:
· have emotional or behavioral disorders
· are receiving mental health services
· are receiving special education services
· are in the juvenile justice system
PIN provides information, helps parents find services and will advocate on their behalf with any of the public systems that serve children. These include the mental health system, education, and other state and local child-serving agencies.
Talk About Curing Autism (TACA -PA)
www.tacanow.org/local-chapters/northeast/pennsylvania
Local PA Chapter of TACA- “A national non-profit 501(c)(3) organization dedicated to educating, empowering and supporting families affected by autism. For families who have just received the autism diagnosis, TACA aims to speed up the cycle time from the autism diagnosis to effective treatments. TACA helps to strengthen the autism community by connecting families and the professionals who can help them, allowing them to share stories and information to help improve the quality of life for people with autism.”
Variety Philadelphia – The Children’s Charity
www.varietyphila.org
“Our mission is to build independence and self-confidence in children and youth with physical and developmental disabilities. Variety offers educational, recreational and social enrichment activities while connecting families to resources.”
Vision for Equality
www.visionforequality.org
The mission of Vision for Equality is “To assist and empower people with disabilities and their families to seek quality and satisfaction in their lives as well as equal access to supports and services… We seek to bring people to full empowerment and to advance the ideal of services that highlight accountability, quality & equal availability for all.”
1-800 Contacts Connect
Are you concerned that your child may have vision issues? Here is a link to discover some signs to watch out for that may indicate your child has a vision problem: