Self-Advocacy | Adults with Disabilities: Preparing for Transition to Independent Living

  

From the moment our babies are born, as parents we understand that it is our responsibility to prepare our children for adulthood. As typically developing children grow and learn about the world we live in, they mature and travel the expected path into adulthood. Parents of children with disabilities watch as their children grow with a very different perspective.  Some of these parents will wonder how and even if their children will be able to live independently. It is true that some people with disabilities will always need assistance, but for many others, living independently is a well-planned reality. 

It is important to understand that this has not always been the case. When we research the history of how people with disabilities were treated, it is deplorable. While we think of how far we've come as a society, we should never forget the shame of how inhumanely people with disabilities were institutionalized. In the essay The New Disability History: American Perspectives, ed. by Paul K. Longmore and Lauri Umansky, we read about the extent to which there was no inclusion, no rights, and no humane considerations for people with disabilities. 

Thankfully, many changes have been made that ensure civil rights to adults with disabilities, requiring equal access to the enjoyment of having a home of their own. Thanks to the Americans with Disabilities Act (ADA), there are laws and policies in place to protect all people, regardless of ability. There are many agencies who help provide the necessary resources to support the unique needs of the adult.

In order to prepare for living independently, a young adult needs to understand the importance of self-advocacy. Educators who have extensive knowledge of the unique needs for students with disabilities, provide opportunities to work together with the IEP/TIEP/504 team, to teach the student daily living skills, including practice in self-advocating. Self-advocating, put into the simplest terms, means to be able to take care of oneself, stand up for oneself, to know how to ask for help when needed and whom to ask for help.

The National Technical Assistance Center on Transition has provided a list of the key independent living skills needed for adults with disabilities on their website: "Self-care/independent living skills are skills necessary for management of one’s personal selfcare and daily independent living, including the personal management skills needed to interact with others, daily living skills, financial management skills, and the self-management of healthcare/wellness needs." (NTACT)

There are many options used to begin to prepare for this transition. The first step towards independent living might be an ecological assessment to see what skills will be needed in the variety of environments the young adult will participate in. Once the skill needs are determined, a goal will be developed to target the skill development. For example, a Daily Checklist would be beneficial, to teach self-advocacy by ensuring that all aspects of hygiene, housekeeping, and financial management are completed on a daily basis. 

For additional resources please explore these Resource Round-Up pages: 

Self-Advocacy  | Resource Round-Up for Adults with Disabilities: Postsecondary Education & Employment 

https://anaedwardsautismteacher.blogspot.com/2023/07/self-advocacy-resource-round-up-for.html

Self-Advocacy  | Resource Round-Up for Adults with Disabilities: Policy Issues, Inclusion, Housing, and Assistance

https://anaedwardsautismteacher.blogspot.com/2023/07/self-advocacy-resource-round-up-for_16.html

References

Longmore, Paul K., Umansky, Lauri. The New Disability History: American Perspectives. New York:      New York University Press, (2001).

Americans with Disabilities Act. U.S. Department of Justice, Civil Rights Division.
  https://www.ada.gov/

National Technical Assistance Center on Transition (NTACT). Community Engagement and      Independent Living. https://transitionta.org/topics/community/ 

Self-Advocacy | Resource Round-Up for Adults with Disabilities: Policy Issues, Inclusion, Housing, and Assistance

 When you need help finding help, this is a great starting point! 

Advocating for your self can be overwhelming.  With the help of a knowledgeable, supportive agency, the assistance you need is available. 

The available resources are not limited to this list, but I've included some great options as a starting point. The first link is for Project 10 which is a valuable source of help for a variety of needs, for people with disabilities and their family or caregiver.

Project 10-
Resources for family and student
http://project10.info/Index.php 

Community Awareness, Statewide Issues, Promoting Inclusion

APD Cares- Connecting you to the community
FL SAND (Florida Self-Advocates Network’D)

Florida Self-Advocates Network’D (FL SAND) is Florida’s statewide network of self-advocacy groups. Through FL SAND, Florida’s self-advocacy groups unite to speak to others about statewide issues and topics that are important to them, create community awareness, and promote inclusion for all. Working with self-advocates that have joined FL SAND can help you to become a stronger self-advocate.  Go to https://www.flsand.org to learn more about FLSAND and to find a group near you.
https://apd.myflorida.com/selfadvocacy/

Disability Rights Florida
10 Steps to Effective Self-Advocacy

Advocating for yourself is very important because it lets others know that everyone, including people with disabilities, has rights. When you become a self-advocate, it helps others understand that you are entitled to be treated with respect and dignity. This is the best way to express your needs and to have your voice be heard.
https://disabilityrightsflorida.org/disability-topics/disability_topic_info/10_steps_to_effective_self_advocacy

National Council on Independent Living
NCIL advances independent living and the rights of people with disabilities. NCIL envisions a world in which people with disabilities are valued equally and participate fully.

Housing, Financial assistance, and Food Assistance

Disability Advocacy Organizations

These organizations protect and advocate for the civil and human rights of people with disabilities.

ADAPT
American Disabled for Attendant Programs Today DEFENDS OUR FREEDOM to live in our homes, not nursing homes!

Florida Center for Inclusive Communities
https://flfcic.cbcs.usf.edu/index.html
Since 1963, University Centers for Excellence in Developmental Disabilities Education, Research, and Service (UCEDD) have been working to accomplish a shared vision that foresees a nation in which all Americans, including Americans with disabilities, participate fully in their communities. Independence, productivity, and community inclusion are key components of this vision.

The Arc of Florida
Our Mission Working with local, state, and national partners, The Arc of Florida advocates for local chapters, public policies, and high quality supports for individuals with intellectual and developmental
 disabilities to be fully included in all aspects of their community.

Family Network on Disabilities
Florida’s resource for helping families of children with disabilities. You’ll find the resources and support your family needs.

Able United
An ABLE United account gives Floridians with a disability a tax-free way to save, without losing public benefits.
https://www.ableunited.com/?gclid=EAIaIQobChMIo7ShnOm76gIVibWzCh0KSQndEAAYASAAEgLV3fD_BwE

Agency for Persons with Disabilities- Work Incentive Planning and Assistance (WIPA) Projects
https://apd.myflorida.com/brochures/Keep%20your%20benefits2014.pdf

Financial assistance, Food, Housing, and Employment assistance
https://www.needhelppayingbills.com/html/government_assistance.html

Self-Advocacy | Resource Round-Up for Adults with Disabilities: Postsecondary Education & Employment

 There are so many great links to help you, your TIEP team, other family members, or caregiver create a plan for your postsecondary education. I've listed a few here to get you started.

The first link is for Project 10 which is a valuable source of help for a variety of needs, for people with disabilities and their family or caregiver.

Project 10-
Resources for family and student
http://project10.info/Index.php 


Postsecondary Education

Understood-The difference between accommodations and modifications
When a student has an Individualized Education Program (IEP) or a 504 plan, you’ll likely hear the word accommodation. You may also hear school staff members say modification. While the two words sound similar, they mean different things.
https://www.understood.org/en/articles/the-difference-between-accommodations-and-modifications

Florida Center for Students with unique Abilities (FCSUA)-
The purpose of the Florida Center for Students with Unique Abilities is to provide support to students, families, and institutions of higher education so that students with intellectual disabilities have opportunities for on-campus college experiences that lead to employment opportunities.
https://fcsua.org/

Florida Center for Students with Unique Abilities - Find a Postsecondary Education Program-
Approved Florida Postsecondary Comprehensive Transition Programs
provides basic program and contact information for each approved Florida Postsecondary Comprehensive Transition Program (FPCTP).
https://fcsua.org/E_postsecondary.php

Florida Center for Students with Unique Abilities- Florida Postsecondary Comprehensive Transition Program Scholarships
The Florida Postsecondary Comprehensive Transition Program Act (the Act) (FS 1004.6495) established the Florida Postsecondary Comprehensive Transition Program Scholarship for eligible students to attend approved Florida Postsecondary Comprehensive Transition Programs (FPCTPs). Scholarship are available only to eligible students, defined as a student with an intellectual disability, who has provided required documentation regarding his or her intellectual disability; who physically attends the eligible institution; and is enrolled in the FPCTP. 
https://fcsua.org/E_scholarships.php

Think College- GETTING ACCOMMODATIONS TO SUCCEED AT COLLEGE
Accommodations are supports and services provided at no cost to eligible students with disabilities to have equal access and opportunity to benefit from classes, programs, and activities.
https://thinkcollege.net/sites/default/files/files/resources/HTTC_04_Getting_Accomodations_to_Succeed.pdf

Think College-
This guide shares questions about important aspects of the college program, and are offered to help students and families learn as much as they can about program operations so they can make an informed choice about which college is best for them.
https://thinkcollege.net/sites/default/files/files/resources/Conducting_College_Search_HTTC1v2.pdf

Think College- The Family Guide to Secondary Transition Planning for Students with Disabilities
http://project10.info/Documents/FamilyGuide_FINAL_PLUS_CTE_Grad_Pthwy_3.26.20_1.pdf

Think College- Postsecondary guide- The Boggs Center on Developmental Disabilities
Self-Advocate’s Guide to Choosing a Post-Secondary Program: Charting Your Course Through a New Landscape
https://thinkcollege.net/sites/default/files/files/resources/Postsecondary-guide-fillable2018.pdf


Florida Department of Education- Career & Adult Education
The Career & Technical Education (CTE) Programs section is responsible for developing and maintaining educational programs that prepare individuals for occupations important to Florida’s economic development. 
https://www.fldoe.org/academics/career-adult-edu/career-tech-edu/

Employment

Able Trust-
The mission of The Able Trust is to be a key leader in providing opportunities for successful employment for Floridians with disabilities.

The organization was created by the state legislature in 1990 as the Florida Endowment for Vocational Rehabilitation, as a direct supporter of vocational rehabilitation efforts by state agencies and community organizations. Operating under the dba of The Able Trust, the organization has helped to put thousands of individuals with disabilities to work and has supported employment-related efforts in all counties of Florida.
https://www.abletrust.org/about-us/

CareerSource Florida- Career Services
Are you looking for a career change or programs that will help you land your dream job? Your local workforce development board and employflorida.com can help.
https://careersourceflorida.com/

Self-Advocacy | Adults with Disabilities: A Smooth Transition Begins Long Before Adulthood

 "Disability is not a brave struggle or courage in the face of adversity. Disability is an art. It's an ingenious way to live." ~ Neil Marcus, actor and playwright

These are the first words we read in Emily Ladau's enlightening and beautifully written book in 2021, Demystifying Disability: What to know, What to Say, and How to be an Ally. These profound words are important to keep in mind, whether you are a person with disabilities or a person who is presently free of disabilities. The world as most of us know it, has for the most part, been built for people without disabilities. Fortunately, over the last few decades there has finally been acknowledgement that not everyone's body works in the same manner. There are many barriers that need to be adjusted or removed to allow access to everyone, regardless of limitations their disability may include.

By the time a student with disabilities graduates from high school, he has not only completed all the necessary academic requirements, he has accomplished this goal in spite of many barriers and challenges that his non-disabled peers did not encounter. The student received the support of his IEP/TIEP or 504 team, the professionals who worked together to ensure he had all the resources that provided a level-playing field. 

But what comes next? After high school, a new, exciting chapter begins: adulthood and all that comes with it. Just like that, the expectations for 18-year-olds include getting a job, a home, a car, starting a family of their own... Are these aspirations possible for a young person with a disability? Absolutely. 

The most important step to ensure the success of any student is preparation for their future. Just as a non-disabled student would begin postsecondary planning with the school counselor, the Individuals with Disabilities Education Act (IDEA) requires that a disabled student will begin the transition process by the age of 16. As detailed on Disability Rights Florida website, in Florida the transition process begins at the age of 12 or in the 7th grade, whichever comes first. During this transitioning process, assessments will be administered to help the student determine his strengths, preferences, and needs.

While prior to the age of 12 the student may not have been present for the IEP/504 meetings, at this time the student not only has the opportunity to attend meetings, but he will also be participating in the meetings and advocating for himself in the planning process. This change doesn't signify the end of parental input and involvement, by any means. For some students, with more extensive disabilities, the parents or guardians will continue to make decisions. But having a disability should never prohibit a person from reaching their goals, they just need a good plan created by the student and his team.

Self-determination plays an important role in the outcome of any transitioning process, with many factors involved. In the article written by Karrie A. Shogren, PhD and Leslie A. Shaw, MA, The Impact of Personal Factors on Self-Determination and Early Adulthood Outcome Constructs in Youth With Disabilities, we learn that there are several factors that impact the success of young adults with disabilities.  Race, gender, and family income are factors that may impact the student's level of self-determination, autonomy, psychological empowerment, and self-realization.

However, when the necessary support unique to each student is provided, there is a development of confidence in his own power to overcome the challenges he will face. When a student is given the dignity to fail, he comes to realize there will be mistakes made but there are important lessons in those failures. His sense of empowerment grows as he learns how to problem solve and how to ask for help, as well as from whom. Self-determination comes from within, built in great part from the support every student requires and deserves. The family, the IEP/TIEP/504 team, and the student work together to design the path that will lead the way into a successful outcome for the student, as he enters adulthood.

For additional resources please explore these Resource Round-Up pages: 

Self-Advocacy  | Resource Round-Up for Adults with Disabilities: Postsecondary Education & Employment 
https://anaedwardsautismteacher.blogspot.com/2023/07/self-advocacy-resource-round-up-for.html   

Self-Advocacy  | Resource Round-Up for Adults with Disabilities: Policy Issues, Inclusion, Housing, and Assistance
https://anaedwardsautismteacher.blogspot.com/2023/07/self-advocacy-resource-round-up-for_16.html

References

Ladau, E. (2021). Demystifying Disability: What to know, What to Say, and How to be an 
           Ally. Ten Speed Press.

Disability Rights Florida. Intro to Transition: Students with Disabilities, School & Work.
 https://disabilityrightsflorida.org/disability-                            
 topics/disability_topic_info/students_with_disabilities_school_work#:~:text=Students%20i    n%20special%20education%20are,transition%20planning%20IEPs%20(TIEPs).  

Shogren, K. A., Shaw, L.A. (2017). The Impact of Personal Factors on Self-Determination 
               and Early Adulthood Outcome Constructs in Youth With Disabilities. Journal of
               Disability Policy Studies 2017, Vol.27(4) 223-233