To be in charge of your own life, you must be able to advocate effectively for yourself or have others advocate on your behalf. As an individual with a disability transitioning from school to adult life, you have the right to take charge of decisions that will affect you for the rest of your life. These decisions may be controversial or challenging to the system, but they are your decisions. As you get older, these decisions become not only your right but your responsibility. These responsibilities might include:
It is often easy for people, especially when young, to let others make decisions for them. However, as you become older you need to examine your own feelings, look at your own life, and decide which direction you want to take. This can be especially difficult if important people in your life do not agree with your ideas. Some parents, for example, want their children to become a brain surgeon or banker even though their children dream of becoming an actor or a chef. Sharing what you would like to get out of life is almost impossible when others frown on your decisions or disregard them entirely. However, if you take a good, hard look at your life (including your strengths, weaknesses, interests, and preferences) and are able to say why the dreams and goals are important to you, you may reach a compromise so you can still get the support you need to achieve your goals.
Speak Up for Yourself
If decisions are being made for you with which you disagree, such as
where you will live, what kind of work you will do, and where and how you
will spend your leisure time, you must immediately voice your opinions.
Speaking up for yourself means initiating discussion and not waiting until
you are asked.
With certain exceptions, where you live, work, and spend your time is up to you. Very few people can afford to live in a million-dollar mansion. However, as stated previously, you can make your own choices about how you live. If you are offered services from a human services agency that aren't right for you, you have the option of working with a counselor or service coordinator to create new, individualized services to satisfy your needs. For example, the agency you are working with may have an opening in a group home but you may want your own apartment. If, because of your disability or location, your choices are limited, you may need to advocate for improved options and/or services.
The advocacy process may take time but will be worth it in the end. The following are steps you might take:
You have the right to make your own decisions without bowing to pressure
from others. For example, your brother or sister may want you to visit
one week. You love your sibling and want to go but know that things are
very busy at work. Your sibling may become angry when you say no, but you
can calmly explain why you have made the decision and that your decision
needs to be respected.
Remember that making your own decisions also involves living with the consequences of your choices. For example, an individual who has difficulty speaking but refuses alternative communication methods and chooses to use only spoken language may have to live with fewer people understanding him/her. If you choose not to work, you may have no income, which in turn means you can't pay your living expenses and may become homeless or dependent on welfare. Being able to make your own decisions also means taking responsibility for your actions.
Taking Risks and the Possibility of Failure
Risk taking can sometimes be difficult. Many people go through their entire lives always choosing the path that is safest, but the option for risk is always there. Others may tell you something will be too difficult or not safe enough. They can give you their opinions and advice, but if you want to try it, that is your right. Risks are different for different people and can include anything from wearing certain clothes to parachuting from 10,000 feet.
Taking risks might also mean that you fail. Sometimes making certain
choices leads to failure. But even when you fail, you have gained a learning
experience. We often learn much more from our failures than from successes.
Communities offer a variety of services and activities for those individuals
who are interested. If you become actively involved in the community, you
can more easily shape activities and services to fit your own needs. You
might simply volunteer for various activities in the community (e.g., soup
kitchens, fund raising, volunteer firefighting). Your participation can
give you a feeling of belonging and it can help others see that individuals
with disabilities can be contributing members of the community. It also
may help to gain their respect. When you voice your needs and/or concerns
in the community, you will have a better chance of being heard because
you are a respected, active citizen.
Another way to become involved in the community is through politics. Many cities and towns have open meetings at least once a year. These meetings are a place to find out about the local issues as well as to highlight your own concerns. Reading your town's newspapers or watching its cable station can also help you learn about local politics. For example, if there are certain issues that interest you, you can volunteer to promote public awareness on those issues, or volunteer to help a council person who also believes the issue is important. Remember, to be a contributing member of your community, you do not have to remain only locally involved. If you are interested in bigger issues of the state or country, there is nothing to stop you from pursuing that goal.
Because we live in an interdependent society, you rarely need to find solutions to your problems all by yourself. Many people discuss problems with their friends and colleagues. Find people you trust and ask them to assist you with a problem if you are uncertain how to solve it yourself. On the other hand, you cannot depend on others to solve all of your problems. If you have a problem and have asked others to help you solve it, you will still need to check back with them. This is part of the responsibility of adult life.
For example, you may be waiting to get information about important services in the mail (e.g., information on social security or an application for services). If the information does not arrive when it should, call back. Always keep a log of the people you speak with and jot down or record notes so later you can remember what they said. If you feel that someone is dragging his/her feet, ask to speak to the supervisor or a manager or follow up phone calls with letters. If none of these strategies works, you have several options. You can decide you want to stop pursuing the matter. You can try another agency. You can enlist the support of an advocacy group. You can call a local politician. You can go to the media.
Sometimes the necessary resources may be difficult to find. For example, one individual may need some assistance getting dressed and fed in the mornings, another may need a ride to and from work. Another might be able to do those things just fine, but may need help balancing a checkbook and paying bills. Sometimes friends, family members, or co-workers can help out. At other times you might need the support of an agency or paid assistant.
Think about the supports you will need to achieve your goals. If you
are uncertain, ask a friend or a trusted professional for assistance. Once
you know what you need, begin meeting with others to discover how you might
organize those supports. Look at the list of adult service agencies, service
providers, and independent living centers in the Appendices at the end
of this guide and begin calling people to find out who might be the best
resource for different services.
SSDI is an insurance benefit paid to people who have worked and paid social security taxes (F.I.C.A.) for enough years to be covered under social security. Beneficiaries are people with disabilities or individuals who are blind. If one is disabled or retired and receiving SSDI, one's child may be eligible to receive SSDI. Medicare also is provided as part of the SSDI program.
Supplemental Security Income (SSI)
SSI benefits are paid to people with disabilities or to individuals who are blind and have little income and few resources. Eligibility depends on income and other financial resources. Until a child turns 18, the parent is considered an "other financial resource." Their incomes are considered together. After a child turns 18, parental income and resources will not be a factor. Medicaid is provided as part of the SSI program.
Although there are differences between the SSDI and SSI, the work incentives under both programs are designed to accomplish the same objective: to provide support and assistance while you attempt to return or as you first enter the work force. The social security law includes several special rules that allow people with disabilities to work and continue to receive benefits.
Impairment Related Work Expenses (IRWE)
IRWE are certain expenses for items and services you need in order to work because of your disability. These items are paid for directly by you andmay be deducted when counting earnings to determine if you are performing substantial work. For SSDI, these costs can be deducted from gross monthly earnings in determining substantial gainful activity during the extended period of employment and beyond.
For SSI, these costs can be deducted from gross monthly earnings in determining the new amount of the SSI check. IRWE can be counted in determining eligibility for SSDI, but not SSI. Examples of expenses that may be deducted from your earnings include attendant care services related to work, job coach services, transportation costs (e.g., vehicle modification, driver assistance), medical devices, work-related equipment and assistants, prostheses, and routine drug and medical services. The social security office reviews all your monthly out-of-pocket expenses for work-related items and services. Using a formula and worksheet, your gross monthly earnings are refigured for SSDI benefits and SSI assistance.
Plan for Achieving Self Support (PASS)
PASS permits you to set aside money and assets toward a plan designed to help you support yourself now or in the future. The savings must be used to achieve a work-related goal such as education, vocational training, or purchasing equipment needed to start a trade or business. The money set aside won't reduce your SSI payment. You must be able to achieve the goal of the PASS within a specified period of time. Generally, 18 months is the limit for an initial period, but a PASS may be extended for as long as 48 months. Examples of goods and services that a PASS can be used for include supported employment services; equipment necessary to carry on a trade or business; educational or vocational training to achieve a job goal; and items associated with training, such as meals at school, books, special equipment, and transportation. A PASS must be in writing and state your work goal, the amount and sources of income or resources that will be set aside, and how you will spend the money. Anyone may help you write your PASS. Using a formula and worksheet, the social security office evaluates the PASS and determines its acceptability.
To learn more about Social Security Administration's programs or to
apply for SSDI or SSI, contact the social security office at (800) 772-1213
for an office near you. To know more about IRWE or PASS, call your local
social security office or the Massachusetts Rehabilitation Commission.
It's great that someone has had the foresight to assist you in planning for your future! The work from your meetings last year should really help you envision some ideas for your Individualized Education Plan (IEP).
The law requires that students are invited to their meetings and that their preferences and interests are discussed. If you do not attend, you may miss your opportunity to tell people what is important to you and to discuss your vision of adult life. Planning will continue even if you do not attend. Therefore, although you are not required to attend these meetings, if you want to have any input into your program and plans for the future, you would be wise to attend and participate. If you decide not to attend future meetings, you may want to jot down things that are important to you and ask someone who will be attending the meeting to read your notes on your behalf.
I've been to a couple of meetings to discuss my education and goals for the upcoming year. There are some things that I would like to work on, but I feel uncomfortable talking about anything in a room full of adults!
As an individual with a disability, you should be familiar with your rights. Laws and resources are reviewed in the first section of this manual. Additionally, the following list of rights, developed in Texas, holds true everywhere. (from Transition in Texas: A Technical Reference Guide for the Development of Quality Transition Plans, p. 17)
We believe that all people should enjoy certain rights. Because people with disabilities have consistently been denied the right to fully participate in society as free and equal members, it is important to state and affirm these rights. All people should be able to enjoy these rights, regardless of race, creed, color, religion or disability.
The right to live independent, active lives.
The right to the equipment, assistance and support services necessary for full productive lives, provided in a way that promotes dignity and independence.
The right to an adequate income or wage, substantial enough to provide food, clothing, shelter and other necessities of life.
The right to accessible, integrated, convenient and affordable housing.
The right to quality physical and mental health care.
The right to training and employment without prejudice or stereotype.
The right to accessible transportation and freedom of movement.
The right to bear or adopt and raise children and have a family.
The right to a free and appropriate public education.
The right to participate in and benefit from entertainment and recreation.
The right to equal access and use of all businesses, facilities and activities in the community.
The right to a barrier-free environment.
The right to legal representation and full protection of all legal rights, including the right of access to all voting processes.
The right to determine one's own future and make one's own life choices.
I just started high school and suddenly everyone is expecting me to come up with ideas and dreams and goals for my future. I have no idea what I want to do tomorrow let alone four years from now! I just want to make it through each day. Do I really have to go through this lengthy process? None of the other kids I know does!
Transition planning is intended to assist you in achieving the things you want sot that you reach your fullest potential. As you said, you are just beginning high school and should not feel pressure to decide what you want to do with the rest of your life. Any meetings or discussions held regarding this process are meant to assist you. Because you are receiving special education services, you might need a little more help than some of your peers in planning your future; however, some schools formally assist all students with the transition process.
Although you may not know what you want to do in the future, you might have some ideas about the kinds of things you like. Use this time to explore your options. If you enjoy science and experimenting, for example, take courses relating to science. Talk to your teachers and find out if they can help you get a science-related job. If you enjoy music, take lessons or join a school music group. This type of exploring is all part of the transition process. But remember, it is your process. Although you may need to fulfill some course requirements in order to graduate, take advantage of your elective courses and extracurricular activities. Don't forget that the things you are interested in right now might be totally different next year or the year after. This is all part of the process. You need not feel pressured into locking yourself into one dream.
I am really worried that when I leave high school I won't have anywhere to play basketball. I mentioned to my teacher that I would like to talk about this at my IEP meeting and he said it was not appropriate. What should I do?
The reason students are invited to attend IEP meetings is so they can be active participants. One of the outcome areas in transition planning is community experiences, which include leisure/recreation. If basketball is important to you, you may discuss it under this outcome area. You might try one or more of the following:
Once you graduate and accept your diploma, you are no longer eligible for public education services. You might:
At age 18 you are your own guardian unless a parent/family member/current guardian has gone through a guardianship procedure to become your legal guardian(s). If you are living with your parents, you may need to talk to them about increasing your independence. However, unless they have gone through a guardianship procedure, you are your own guardian and have all the applicable rights and responsibilities, including signing your IEP, attending school meetings, finding a job and place to live, or enrolling in adult services.
The agency I am working with has told me that I am eligible for services, but they say that what I want isn't available. What should I do?
I have been told that there is a waiting list for the services I want. What should I do?
By all means, get your name on the waiting list. Being on a waiting list does not mean you cannot continue to look for services elsewhere (e.g., another agency). Also, if your life circumstances should change quickly or unexpectedly, for example, if you lose your job or your home, being on the waiting list may help you to get served more quickly. Don't limit yourself to services that are currently available. Advocate for your ideal and you just might get it!
I have applied to an agency for services and they have told me I am not eligible for services, but I need services and feel they are the most appropriate agency. What should I do?
Each agency has its own appeals process if you disagree with eligibility, priority for funding, or availability of services. You will have to check with the agency for their process as there is no one independent body that will hear your appeal and then make a ruling. Unfortunately, however, adult services are based upon an annual budget (appropriation) and are not an entitlementthere are no guarantees you will get the services you want or need. Again, remember that those with the loudest or most persistent voices most often get what they want.
I have so many forms and applications to complete and so much information that I feel I cannot keep everything organized. What should I do?
Unfortunately, the amount of paperwork an individual has to complete in order to comply with regulations can often be overwhelming. You might do the following:
If you are satisfied with the services you are receiving, chances are
you are getting what you need. However, new information may exist that
neither you nor the agency who works with you knows about. Consider the
Do you frequently have to remind your service provider to get answers to questions and/or services?
Do people show up on time for meetings?
Do you have a say about what services you will receive?
Do you feel that you are getting support in all the areas you need?
Do people respect your opinions?
I am unhappy with the services I am receiving from an agency. Is there anything I can do?
Each agency has a different process for logging complaints. Call the agency to discover their process. If a state agency is contracting with a service provider to offer you services, find out about changing your service provider. Document all calls and keep copies of all correspondence. If you seem to be getting nowhere, contact the Federation or local Independent Living Center (see Appendix I under Information and Referral Centers, and Independent Living Centers) to find an advocate.
I am about to graduate high school and know that I might need proof of my disability at some future date (to receive services, benefits, and/or accommodations). What do I need exactly?
You might never need documentation of your disability; but you're right--it is a good thing to have.
So you have tried asserting your rights. You have tried to share your dreams and goals, make your own decisions, and take some risks. You have tried to speak up for yourselfbut no one seems to be listening.
What if you have tried to work things out with others, but you have
been unable to reach compromises? In this situation, you must examine each
person's point of view, then weigh the consequences of the different outcomes.
These types of decisions are often quite difficult. You may risk losing
relationships or compromising your ideals, but this is part of growing
up. What would you decide to do in the following examples?
A student has been accepted at two colleges. One has a special program that will provide a lot of support and is close to home. The other offers no extra supports and is farther away. A respected and well-liked teacher thinks the student should stay near home, as do his parents. The student wants to try a new location. Being far from home and on one's own for the first time may be a difficult adjustment and may cause the parents and teacher some anxiety. Staying home will make others happy and may be easier, but it would mean giving up part of a dream.
A teacher wants a student to work in a grocery store to gain some work experience. The student wants to explore art as a career option, but the teacher is unfamiliar with resources and opportunities in this area. Choosing the grocery store means a weekly paycheck and a guaranteed job after high school. Choosing to explore art may mean fewer guarantees and supports.
In 1978 I took charge of my life by telling my family that I wanted to go to a regular high school instead of the private special education school I had been attending. It was really hard in the beginning. I really had to struggle to keep up as the level was much more difficult than I was used to. Also the school had no elevators. I had to be really creative to get around the three buildings, various flights of stairs, and 600 other students rushing past me. Some of the teachers did not understand why I was even in the high school, yet others went out of the way to accommodate my needs. My family and brother, who attended the same school, were also very supportive.
A lot of people tried to discourage me from going to public school. They warned me, "You will be isolated, You won't be able to handle the academics, You won't be able to go to the prom, You will fall down." Although school was difficult in the beginning, I did manage to achieve passing grades. I asked someone to go to the prom with me but he already had a girlfriend. And I even fell while taking a short-cut through the parking lot. I broke all of my teeth. But today I still have friends from high school with whom I stay in touch.
When I was 16, the Massachusetts Rehabilitation Commission began assisting me with certain things. They advised me on where to get driving lessons and did some vocational testing. Although my choices of college were limited because of my low SAT scores, I was accepted at Emmanuel College on the condition that I only take three courses the first year and that I would agree to live on the first floor of the dorm.
At first I had difficulty speaking out for myself at college because people were already going out of their way to accommodate my disability. It was uncomfortable to ask for even more assistance. But by the time I finished college I had lived on every floor of the dorm; changed my major from languages (because of my desire to continue traveling) to political science (thanks to a supportive and encouraging professor); learned to adjust to life with a roommate; and got used to boys, parties, drinking, and drugs, all of which I had not been exposed to before college.
When I graduated from college, I could have worked in my dad's office, but I did not want my family to keep taking care of me. My MRC counselor told me about a job at the Boston Center for Independent Living (BCIL) and I was hired on the condition of on-the-job training. Under this condition, MRC paid half my salary and BCIL paid the other half. This lasted for six months, the period of my training, then MRC faded out and BCIL became my exclusive employer. I worked there for three years. I have also worked at the Massachusetts Coalition of Citizens with Disabilities and Partners for Youth with Disabilities. I currently work at Northeast Independent Living Center, where I assist kids in developing the skills necessary for transitioning from school to post-secondary education, housing, and recreation options.
When I was working at BCIL I met my husband. I was having a staff party and John had been invited -- he worked on the newsletter at the time. At the last minute, I canceled the party but had no way to let John know. So he showed up at my house. Turns out it was his birthday so we went on our first date. We dated for three years until he proposed on Valentine's Day on a park bench in the Boston Common after taking me to dinner at the Ritz.
We just bought a condo and had to work with the builder to make it accessible.
We had to redesign the kitchen with space under the stove and sink, the
bathroom, widen all the doorways, install new carpeting, and work out many
more details. We live in a great location and I can get everywhere I need
to in the neighborhood on my battery-operated scooter. We're not thinking
about kids yet. I am uncertain about support from my family and besides,
it would interfere with my career!