Crisis Services
ASERT does not offer crisis services through our Resource Center. If you or someone you love is experiencing mental health distress or thoughts of suicide please call or text 988 for support.
Self Advocacy Information for Individuals with Autism
Understanding Self-Advocacy
How to Discuss Self-Advocacy
Self-advocacy means you understand your rights and responsibilities. You speak up for your rights and you are able to make choices and decisions that affect your life.
Self-Advocacy Characteristics
Self-awareness
- Interests, Strengths, and Preferences
- Goals and Dreams
- Supports Needed
- Accommodations Needed
- Characteristics of One’s Disability
- Responsibilities
Knowledge of rights
- Personal Rights
- Community Rights
- Human Service Rights
- Consumer Rights
- Educational Rights
- Knowledge of Resources
Communication
- Assertiveness
- Negotiation
- Body Language
- Use of Assistive Technology
- Listening
- Compromise
Leadership
- Knowledge of Group’s Rights
- Advocating for Others or for Causes
- Knowledge of Resources
- Organizational Participation
When Advocating, Remember to SHARE
(S) Sit up straight
(H) Have a pleasant tone of voice
(A) Activate your thinking
- Tell yourself to pay attention.
- Tell yourself to participate.
- Tell yourself to compare ideas
(R) Relax
- Don’t look uptight
- Tell yourself to stay calm
(E) Engage in eye communication
Resources (Websites) for Understanding Self-Advocacy
LD Online
LD OnLine is the leading website on learning disabilities, learning disorders and differences which include the following topics:
- Identifying self-advocacy objectives on an IEP
- Identifying student skills needed for self-advocacy in a job interview
- Items that should be included on the Transition IEP
- Student specific skills regarding self-advocacy needed in a job interview
The 411 on Disability, A Workbook for Youth with Disabilities
http://www.ncwd-youth.info/411-on-disability-disclosure
National Collaborative on Workforce and Disability for Youth (NCWD/Youth)The 411 Workbook is designed to help young people with disabilities and the adults that support them make informed decisions about disclosure. This Workbook helps young people make informed decisions about personal decisions and how they can impact their education, employment, and social lives. This valuable workbook doesn’t tell young people what to do, rather it helps them think through their personal journeys and assists them in making the decision whether or not they should disclose and openly share details pertaining to their disabilities.
Job Accommodation Network
This website is for employers and employees with disabilities to understand the disability, Americans Disability Act and Reasonable Accommodations on the job site. A list of organizations can be found under each targeted disability.
- Click A-Z of Disabilities and Accommodations
- Click By Disability
- Click on Targeted Disability
- Click on statement “Accommodations & Accommodations”
Center for Parent Information and Resources
http://www.parentcenterhub.org/?s=Self-advoc
Each category leads to definitions and additional resources supporting the self-advocacy process.
Life After High School – It’s Your Child’s Future
This website is a transition resource for parents and youth/young adults.
Self-Advocacy Online: Empower & Connect
http://lifeafterieps.com/self-advocacy-online-empower-connect/
This website is designed to support individuals with intellectual disabilities, including other developmental disabilities. It contains resources such as stories of self-advocacy and connecting to life self-advocacy groups.
Pennsylvania Youth Leadership Network (PYLN)
The mission of the PYLN is to develop the self-determination, empowerment, and leadership of youth that promotes successful post-school experiences among youth and young adults
Starting an Autism Support/Self-Advocacy Group
STEP 1: Research Existing Support Groups and Autism Support Groups
Check with autism organizations or resource centers for developmental disabilities in your area (e.g., Autism Society of America, National Autism Association) to see if a support group that will meet your needs already exists. Don’t forget to check the Autism Community section on www.PAautism.org for a list! If there are no existing groups in your area, you may choose to start your own.
STEP 2: Planning
Think about what you want to accomplish with your support/self-advocacy group. Define a specific purpose for the group. Some examples include information/resource sharing, learning from guest speakers, developing public speaking skills/presentations, planning social/recreational events, etc. Determine how diverse you would like the membership to be (e.g.,a group just for individuals with autism, just for parents/caregivers, just for siblings and family members, or a more mixed group.) Choose a name for your group, and maybe even a logo. Consider how you would like interested individuals to contact you (phone, email, Facebook, other). It is helpful to put this information in writing so that you can share it easily.
STEP 3: Promotion
Get the word out about your support group. Print flyers to post in schools, churches, supermarkets, college campuses, and doctor’s offices in your area. Consider contacting a local newspaper about printing an ad or running an article on Autism Spectrum Disorders that highlights your group. Attend conferences and community events and hand out business cards or a flyer about an upcoming meeting. Schools that are set up to serve children with developmental disorders may inform parents about your group. Social media sites like Facebook can also help promote your group. Some of the organizations you contacted in Step 1 may also be able to help you get the word out. Also, don’t forget to contact ASERT so that we can include your group on our contact list and post your meeting on our calendar.
STEP 4: Establish Group Logistics
Once you have a small circle of interested attendees, focus on group leadership and logistics:
- Group Leaders
- Designate yourself or another individual to lead and facilitate discussions for group meetings. You may also choose to develop a rotation of individuals to lead discussions, or appoint someone to book speakers for some or all of your meetings.
- Meeting Location
- Decide on a location for your group. Remember that you will be sharing information about your group publically, so you may want to use a location other than a private home. Look for community meeting rooms, local churches, non-profit organizations, parks, restaurants, or coffee shops. If you plan to provide childcare during meetings, ensure there is appropriate space for the children.
- Meeting Time
- Think about meeting times that would be appropriate for the people your group is targeting. Decide how often you want the group to meet, such as weekly, bi-weekly, or monthly.
STEP 5: Planning for Ongoing Success
After you have an established group, the last step is to continue to plan for success. Choose individuals or teams to handle different jobs such as booking speakers, preparing talking points, leading meetings, planning events, bringing food, and/or arranging childcare. Continue to ask for feedback from group members about the focus/direction/timing of the meeting, and continue to advertise for new members to keep your group growing.
Self-Advocacy Online
Group, Stories and Research
Self-Advocacy Online is an internet-based program designed specifically for individuals with intellectual disabilities that provides two online modules relating to health, wellness, and exercise. Developed by The Arc’s partners at The University of Minnesota, these online modules are informative, enjoyable, and free.
Disability Rights Pennsylvania
Advocacy Services
DRP 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.
Pittsburgh Center for Autistic Advocacy
The Pittsburgh Center for Autistic Advocacy seeks to advance the equity of autistic people in all realms of life. PCAA believes in inclusive education, policy, and community for autistic people and all people with disabilities. We work to make autistic voices heard in conversations about autism and empower autistic leaders in our community using principals of the disability rights movement and intersectional feminism. We run a monthly social meet up for autistic teens and adults as well as frequent events and advocacy projects. You can find out what we’re currently working on at our website.
Contacts:
Cori Frazer Via email at cori@autisticpgh.org.
Autism Self Advocacy Network (ASAN)
ASAN chapters engage in advocacy work around the collective concept of self-advocacy. ASAN chapters also address individual forms of self-advocacy, as well as help build a community of autistic adults in the areas in which they operate.
Contacts:
- General inquiries Via email at info@autisticadvocacy.org.
- Membership inquiries Via email at members@autisticadvocacy.org.
- Speaking inquiries Via email at speaking@autisticadvocacy.org.
- Chapter inquiries Via email at chapters@autisticadvocacy.org.
The Advocacy Alliance
Mental Health and Disability Services:
The Advocacy Alliance promotes mental well-being and supports recovery for adults who have a mental illness; resiliency for children and adolescents who have emotional/behavioral disorders; everyday Lives for individuals who have developmental disabilities; and independence for older adults and individuals with physical disabilities, by providing advocacy and culturally competent services.
Ticket to Work Brochure
Introduction
Several million disabled and blind Americans receive monthly Social Security benefits, Supplemental Security Income (SSI) payments, or both. Many also have help from Medicare or Medicaid in paying medical bills. Many people with disabilities, however, want to work. To help them, Social Security has work incentives, including the Ticket to Work program. Some of the work incentives allow you to keep some cash benefits, and your Medicaid or Medicare, while you transition to the workplace. And, if you find that you can’t work, it’s easy to start your payments again.
Your Ticket to Work
If you’re an adult age 18 through 64, and you get disability benefits, you qualify for the Ticket to Work program. You can use the Ticket to Work program to get the services and support you need to go to work or to earn more money. The goal is to help you earn enough money so you can become financially independent. This booklet answers questions about the program and tells you where to go if you need more help. If you have questions not answered here, call the Ticket to Work Helpline toll-free at 1-866-968-7842 (TTY 1-866-833-2967).
The Ticket to Work program helps you, free of charge, to get vocational rehabilitation, training, job referrals, and other employment support services.
How the program works:
When you take part in the Ticket to Work program, you can get help finding a job, vocational rehabilitation, or other support. Employment networks and state vocational rehabilitation agencies provide these services. These networks include private organizations and government agencies that have agreed to work with Social Security. They provide employment services and other support to beneficiaries with disabilities.
How do I start?
If you are interested in using the Ticket to Work program to go to work or get vocational services, call the Ticket to Work Helpline toll-free at 1-866-968-7842 (TTY 1-866-833-2967). The Ticket to Work Helpline’s staff can answer most of your questions about the program. They can also give you the names, addresses, and telephone numbers of employment networks, or the state vocational rehabilitation agency or One-Stop Career Center in your area.
You can also get this information online at www.socialsecurity.gov/work or www.choosework.net by selecting the “Find Help” tab. To find your local One-Stop Career Center, visit www.servicelocator.org/onestopcenters.asp, and select your state. If your circumstances make paying for prescription medications difficult, visit www.healthfinder.gov to find out if you qualify for help.
What is an employment network?
Employment networks are organizations that can help you find and keep a job. Employment networks also provide other employment support services at no cost to you. The Ticket to Work program gives you the opportunity to choose from various employment networks.
Employment networks can be a single organization, or a group of providers, that provide all the services you need. The employment network you choose may also work with others who aren’t part of the employment network to provide the services you need. Before you decide to use an employment network, carefully choose the one you think can best help you reach your employment goal.
You’re free to talk with as many employment networks as you want before choosing. You can see a profile for some employment networks at www.choosework.net. Select the “Find Help” tab, type an employment network’s name, state, or zip code in the search box, select “Search,” and then “Open EN Profile” at the bottom of the listing. (Remember, some employment networks don’t have a profile.)
What happens when I contact an employment network or state vocational rehabilitation agency?
To decide if they can help you, staff members will ask questions about your disability, your work history, and other subjects. Feel free to ask questions about how they can help you find and keep the job that is best for you.
Can an employment network or state vocational rehabilitation agency contact me?
Yes, they may contact you to find out if you have an interest in working with them. They’ll give you details to help you decide if you’re interested in help to find employment.
How will and employment network or state vocational rehabilitation agency know that I qualify?
We keep a record of people who qualify for the program, and who aren’t working with employment networks. We give this information to employment networks and state vocational rehabilitation agencies.
What if I don't want to be contacted?
If you don’t want to be contacted, call the Ticket to Work Helpline, and ask them to remove your name from the list. You can still take part in the Ticket program if you are not on the list.
Do I work with a particular employment network or state vocational rehabilitation agency?
No, you and an employment network or state vocational rehabilitation agency must agree you can work together. If you cannot agree, you may contact another employment network.
If you sign a plan with a network or state agency, you can still change your mind and go to another network or agency.
What happens if an employment network or state vocational rehabilitation agency and I agree to work together?
First, the employment network will work with you to develop a plan that’s right for you. The plan will state your goals for the work you want to do, and may include the salary you want to earn. The plan will also state exactly what services the employment network will provide to help you reach your goals. In addition, the plan will explain your rights under the program, including:
- Your right to choose another employment network if you’re not satisfied with the services you get
- Information on available services and help resolving disputes through the state protection and advocacy system
If you and your state vocational rehabilitation agency agree to work together, the agency will outline a plan for the services it will provide. You or your representative (if you have one) and the network or state vocational rehabilitation agency must sign the plan before you can start getting services. The employment network or vocational rehabilitation agency should give you a copy of your plan in an accessible format.
You can work with this organization to change your plan if your situation changes. When you sign the plan with an employment network, you have agreed to get employment support from that network. If you or the employment network decides you can’t work together, one of you must let Social Security know by contacting the Ticket to Work Helpline. You can’t work with another employment network without signing a new plan with them.
If you sign a plan with a state vocational rehabilitation agency, you can later get employment support from an employment network, but you must finish your plan with the state agency first.
Promptly report any earnings, as well as when you start or stop working, to Social Security. You must also report your earnings to your employment network.
What if I'm unhappy with the employment network or state vocational rehabilitation network?
All employment networks have a process to resolve the concerns of unhappy clients. If this process isn’t successful, you can call the Ticket to Work Helpline staff and ask them to resolve your problem informally.
If they can’t resolve your problem informally, they’ll report your problem to us. If you work with a state vocational rehabilitation agency, they’ll give you a description of the services available through the client assistance program. The agency must also give you the opportunity to resolve your grievance through mediation or a fair hearing.
You can also ask the protection and advocacy agency in your state to help you at any stage of the grievance process if you’re unhappy with an employment network.
How does taking part in the ticket to work program affect medical reviews of my disability?
We conduct reviews of your medical condition to see if you still qualify for disability benefits. If we find that you’re no longer disabled, we may stop your benefits.
If you’re taking part in the Ticket to Work program, and making timely progress in your return to work plan, we won’t conduct a review of your medical condition. You’ll get more information about these requirements after you sign a plan with an employment network or state vocational rehabilitation agency.
Do I have to take part in the program?
No, the Ticket to Work program is voluntary. If you can’t work, or have no interest in the program, you don’t have to take part. If you decide not to take part in the program, it will not affect your disability benefits. If you change your mind and decide to take part in the program, contact the Ticket to Work Helpline.
Where can I get more information or advice?
Local state protection and advocacy services can provide information and advice about the Ticket to Work program. And they can help you with any problems you have with the employment plan you develop with the employment network.
The agencies can also give you information and advice about vocational rehabilitation and employment services, and help you select an employment network. Additionally, these agencies can tell you how your work may affect your benefits.
Other work incentives:
In addition to the Ticket to Work program, Social Security has other special rules called “work incentives” that serve as a bridge between disability benefits and financial independence. These work incentives include:
- Some cash benefits while you work
- Medicare or Medicaid while you work
- Help with extra work expenses you may have because of your disability
- Expedited reinstatement
- Plan to achieve self-support (PASS)
You can find more information about Social Security and SSI work incentives by contacting us and asking for Working While Disabled — How We Can Help (Publication No. 05-10095).
Other Social Security programs and resources
Work Incentives Planning and Assistance (WIPA) Projects
These organizations support disability beneficiaries and help them make wise choices about work. WIPA programs help working beneficiaries to make successful transitions to financial independence and to build economically secure futures. These projects have Community Work Incentives Coordinators (CWICs) who offer counseling and information about how work affects disability benefits.
CWICs work with beneficiaries to gather accurate information. They also guide beneficiaries as they return to work or enter the work world for the first time.
Protection and Advocacy for Beneficiaries of Social Security (PABSS)
There are 57 PABSS nationwide. They are part of each state’s Protection and Advocacy program. Attorneys and advocates at these projects give support and guidance on disability beneficiary rights. When necessary, they’ll offer free legal services, including representation. The PABSS goal is to remove barriers preventing you from working so employment can be a real option.
The WIPAs and PABSS work together closely and are excellent resources.
For information on special rules for blind persons, ask for If You Are Blind Or Have Low Vision — How We Can Help(Publication No. 05-10052).
How organizations can become Employment Networks (EN)
To find out more about becoming an employment network (EN), visit www.yourtickettowork.com. You can also contact Social Security’s Employment Network Service Branch toll-free at 1-866-584-5180 (TTY 1-866-584-5181). Or, you can email them at ENService@ssa.gov.
Tools for Meeting Life's Challenges
This website provides information for individuals with disabilities and their families on self-advocacy and self-determination. They include resources on:
- advocacy
- assistive technology
- disability planning
- educational benefits
- medical benefits
Other downloads
| Name | Description | Type | File |
|---|---|---|---|
| Understanding Self-Advocacy | This fact sheet from the Pennsylvania Training and Technical Assistance Network (PaTTAN) provides guidance for parents on how to discuss self-advocacy with their child, as well as resources for understanding self-advocacy. | Download file: Understanding Self-Advocacy | |
| Starting an Autism Support-Self Advocacy Group | Support/Advocacy groups are a great way to learn from others’ experiences, discover local resources, and stay informed about things that are happening in your community. There are lots of different kinds of support/advocacy groups that meet different needs. If you are interested in starting a support or self-advocacy group, the information below will give you some guidance. | Download file: Starting an Autism Support-Self Advocacy Group |
This information was developed by the Autism Services, Education, Resources, and Training Collaborative (ASERT). For more information, please contact ASERT at 877-231-4244 or info@PAautism.org. ASERT is funded by the Bureau of Supports for Autism and Special Populations, PA Department of Human Services.