April 2005 Adapted from ~ Parents' Guide to Transition: What Happens After High School? Written and edited by: Katharin A. Kelker, Ed.D. Roger Holt http://www.pluk.org/trans.html#6 Used with permission Parents' Guide to Transition: What Happens After High School? Introduction When your child is a teenager and nearing the point when he or she will leave high school, you have reached a period of transition. Transition refers to the time when a student leaves school and enters the adult community. This change presents important challenges for both you and your child. As they leave high school, all young people face a number of choices about careers, postsecondary education, living arrangements, and social life. For individuals with disabilities, these decisions are complicated by the need to compensate for or accommodate their learning problems or their emotional, physical or mental impairments. For some young people, transition also means becoming involved with an unfamiliar array of adult services. As a parent of a child with special needs, you have probably become familiar with the school system. Now as your child prepares to leave school, you will begin the process of entering a different phase in your relationship with your child. No longer will you be the sole decisionmaker. Your child will be making many decisions alone. Your child may also be involved in the adult service system. For adult services, the client is the person with the disability and not that person's parents. Thus, with adult services, parents take a more secondary role and are no longer "in the driver's seat." Unlike school services, adult programs may have waiting lists. Also, adult services may have different entrance requirements and methods of operation from school services. To help you understand what transition is all about, this guide provides answers to questions that parents frequently ask. Knowing what to expect during transition will help you and your child to adjust as smoothly as possible to the changes that adult living will bring. 1 ASPIRE provides information to persons who live with ASD, their families and caregivers in order to support their search for resources and their right to choose between them. Unless specifically indicated, we do not endorse any treatment, program, product or service. April 2005 What Roles Do Parents Play in Transition? Parental involvement is key in the transition process. Though there are no specific guidelines for parents to follow, there are several roles for them to play, including (a) members of the IEP Team, (b) providers of information, (c) sources of values, (d) determiners of priorities, (e) case managers, (f) advocates, (g) role models, and (h) most importantly risk takers. The most important role that parents have in transition is the gradual process of letting go. When a child has disabilities and has required a great deal of extra care and concern from parents, it is sometimes difficult for parents to let go of their children and allow them to grow up. There is, however, danger in restricting and protecting children with disabilities unnecessarily. Children with disabilities need experience just as other children do. Parents have to be willing to take some risks and allow their children to experience frustration and failure so that they also have the chance to learn from their mistakes and become more competent adults. Generally speaking, parents have to jump start the transition process and plan ahead so that their children have the training and background they need to take over responsibility for themselves. Parents need to help with daily living skills, sex education, social skills development, and acquisition of good work habits. In order to be effective in planning for their children's transition, parents need to become familiar with the supports and services that adults with disabilities use to assist them in living and working in the community. As with any child, children with disabilities benefit from having parents who assume they will grow up and be on their own some day. Are There Aspects of Transition Planning, Which Only the Family Can Do? As high school graduation approaches, there are a number of decisions which only families and students can make about aspects of adult living. Educators and social agency personnel can be helpful in informing parents about these issues, but parents and students themselves must be the ones to make the final decisions. It is helpful for families to face these issues head-on and take action, so that plans for transition into adult living can proceed in an orderly way. The following are areas of decision-making, which have to be addressed by parents and children together: Independence. As students with disabilities approach graduation from school, it is important for them and their families to consider how much independence is realistic to expect that the students will be able to achieve. Sometimes parents of children with disabilities fall into the trap of being more protective of their children and doing more for them than is really necessary. After all, each task that young adults with disabilities can perform for themselves is one less task that someone else may have to be paid one day to do. School personnel can help parents teach their son or daughter skills that lead to independence, but ultimately parents have to decide how much they are willing and able to let go of their parental role and allow their children to be on their own. 2 ASPIRE provides information to persons who live with ASD, their families and caregivers in order to support their search for resources and their right to choose between them. Unless specifically indicated, we do not endorse any treatment, program, product or service. April 2005 Special Services at Home (SSAH). The Special Services at Home (SSAH) program helps children with developmental or physical disabilities and adults with a developmental disability to live at home with their families by providing funding on a time-limited basis to address individual needs. With this funding, families can purchase supports and services, which they could not normally provide themselves and are not available elsewhere in the community. Further information is available on the Government of Ontario website at: http://www.cfcs.gov.on.ca/CS/en/programs/SpecialNeeds/specialServicesatHome.htm Ontario Disability Support Program. The Ontario Disability Support Program (ODSP) is intended to meet the needs of people with disabilities and help them to become more independent. The ODSP has two parts: • Income Supports provides financial assistance to people with disabilities • Employment Supports provides the supports people with disabilities need to get and keep jobs. For information about the kind of help you may get and how to apply for the Ontario Disability Support Program (ODSP), the following guides are available: • ODSP Handbook http://www.cfcs.gov.on.ca/CFCS/en/programs/IES/OntarioDisabilitySupportProgram/Publicat ions/ODSP_handbook.htm • Information for clients - ODSP Employment Supports http://www.cfcs.gov.on.ca/CFCS/en/programs/IES/OntarioDisabilitySupportProgram/Publicat ions/ODSP_EmpSupClInfo.htm • ODSP Office List http://www.cfcs.gov.on.ca/CFCS/en/programs/IES/OntarioDisabilitySupportProgram/Publicat ions/IES_officeListing.htm Guardianship. It sometimes comes as a surprise to parents when they learn that they have no legal responsibility or control over their child after he or she reaches age 18, unless they apply for guardianship through the courts. The guardianship issue should be considered carefully by families in light of a specific child's needs. Guardianships may only be appointed to meet the actual mental and physical limitations of incapacitated persons. The guardianship must be designed to encourage the development of maximum independence of the ward and may be used only to promote and protect the well being of the incapacitated person. In Ontario there are two acts that govern guardianship: The Substitute Decisions Act (SDA) and The Health Care Consent Act (HCCA). The Substitute Decisions Act (SDA) was passed unanimously by the Ontario Legislature in December 1992. The law came into force on April 3, 1995. The SDA governs what may happen when someone is not mentally capable of making certain decisions about their own property or personal care. 3 ASPIRE provides information to persons who live with ASD, their families and caregivers in order to support their search for resources and their right to choose between them. Unless specifically indicated, we do not endorse any treatment, program, product or service. April 2005 A Guide to the Substitute Decisions Act (SDA) This Guide has been created especially for caregivers, advocates, nurses, doctors, agency and association staff and other interested individuals, to promote a clear understanding of what the Act covers and how it works. The Guide provides a summary of the main points of the legislation. http://www.attorneygeneral.jus.gov.on.ca/english/family/pgt/pgtsda.pdf The Health Care Consent Act. Under the Health Care Consent Act, practitioners are required to obtain an informed consent from, or on behalf of, their patients before providing treatment. In some circumstances, there will be reason to believe that a particular patient is not capable of providing or refusing consent, likely because she/he is not able to appreciate the reasonably foreseeable consequences of a decision or lack of a decision with regard to treatment. In these circumstances, and provided that the Health Care Consent Act, 1995 is followed, the decision of another person can be relied upon. This other person is often referred to as a substitute decision maker. The Health Care Consent Act covers treatment, admission to care facilities, and personal assistance services. A good summary of this legislation is available at: Consent to Treatment: A Brief Overview of the Law in Ontario by Michael Bay http://www.psychdirect.com/forensic/PsychLaw/consent/consent_treat.htm The Mental Health Act. The Mental Health Act deals with guidelines for admitting a person to a psychiatric facility as a voluntary or involuntary patient, the rights of patients in psychiatric facilities guidelines for issuing, and renewing or terminating community treatment orders The following publication by the Consent and Capacity Board is designed to help you understand the Mental Health Act and parts of the Substitute Decisions Act and the Health Care Consent Act. Rights And Responsibilities: Mental Health and the Law http://www.ontario.cmha.ca/admin_ver2/maps/rightsandresponsibilities%2Epdf What is a Power of Attorney? A Power of Attorney is a legal document that gives someone else the right to act on your behalf. In Ontario there are three kinds of Power of Attorney: • A Continuing Power of Attorney for Property covers your financial affairs and allows the person you name to act for you even if you become mentally incapable. • A Power of Attorney for Personal Care covers your personal decisions, such as housing and health care. • A non-continuing Power of Attorney for Property covers your financial affairs but can’t be used if you become mentally incapable. You might give this Power of Attorney, for example, if you need someone to look after your financial transactions while you’re away from home for an extended period of time. 4 ASPIRE provides information to persons who live with ASD, their families and caregivers in order to support their search for resources and their right to choose between them. Unless specifically indicated, we do not endorse any treatment, program, product or service. April 2005 Details are explained in the booklet Powers of Attorney, which is available at http://www.attorneygeneral.jus.gov.on.ca/english/family/pgt/poa.pdf Another very good resource: Programs And Services For Persons With Intellectual Disabilities by C. Tess Sheldon http://www.archlegalclinic.ca/publications/disorders/A73_2003_002616/08_intellectualDisabilitie s/index.asp Sex Education. A young adult who is headed for a more independent life after high school graduation certainly will need the information and skills to deal with sexual maturity. Very few disabilities impair sexual function so parents must assume that their children with disabilities will mature sexually and need help with understanding and managing their sexual functions. Families should consider how much and what kind of sex education would be useful and may also need to deal with issues of birth control or sterilization. In Canada, sterilization of adults who are incapacitated is allowed only when it's essential for their mental and physical health and is very rarely granted. Some sample resources: Sex and Sexuality http://www.enablelink.org/sexuality.html?showsex=1 spiderbytes.ca (Teen Sex Information Program) http://www.spiderbytes.ca/Sexuality/Sexuality_Disability.shtml Speak Up http://www.aacsafeguarding.ca/ Sterilization. The law prohibits a substitute decision maker from consenting to non-therapeutic sterilization of a person who is incapable of such a decision. Consent on behalf of the person to his or her sterilization as medically necessary for the protection of the person’s health must be consistent with the law. It should appear in the Guardianship Plan or be the subject of an amendment to the Guardianship Plan prior to consent being given. http://www.attorneygeneral.jus.gov.on.ca/english/family/pgt/SDA-Form3.pdf Age-Based Legal Milestone. Justice for Children and Youth has produced a document entitled Summary Of Age-Based Legal Milestones For Youth In Ontario, which is available at http://www.jfcy.org/age/milestone.html#over19 Young adults, whether they are disabled or not, are free to marry when they have reached the legal age (18) and have complied with legal requirements (e.g., physical examination). 5 ASPIRE provides information to persons who live with ASD, their families and caregivers in order to support their search for resources and their right to choose between them. Unless specifically indicated, we do not endorse any treatment, program, product or service. April 2005 Driving. Whether or not a teenager with disabilities can get a driver's license depends upon the instruction the student receives and the student's level of skill and judgment. In planning the transition from high school, it is important to discuss the realistic possibilities for a student to benefit from driving instruction and pass the driver's test. If drivers' training is offered in the student's high school, students with disabilities are certainly eligible for such instruction and must be accommodated if they have potential for learning to drive. If a student is unlikely to be able to drive or to pass a driving test, then plans should be made to assist the student in learning to use alternative means of transportation like public buses or a bicycle. Staff at the Independent Living Centres (ILCs) can be helpful in assisting young adults with accessing public transportation. (See Canadian Association of Independent Living Centres (CAILC) at http://www.cailc.ca/CAILC/text/ilrcs/canada/intro_e.html#ont) Young adults with physical disabilities can learn to drive with appropriate mechanical modifications of their automobiles. The local vocational rehabilitation office can supply information about hand controls and other such devices. (See Ontario Driver Assessment Centres for driver rehabilitation services at http://www.ices.on.ca/informed/periodical/subissue/126-ip6413.pdf) A portable parking permit allows holders to use designated parking spaces and benefit from exemptions to local municipal traffic control and zoning by-laws. The permit is free to eligible persons. Getting or Replacing a Disabled Person Parking Permit (DPPP) http://www.mto.gov.on.ca/english/dandv/vehicle/disabled.htm Young people with print impairments (e.g., learning disabilities) can request accommodations for taking the written driver's test. The questions can be read aloud to the applicant. What Should Parents Do When a Child Cannot Get a Driver's License and Has No Form of Personal Identification? Other forms of photo identification include (but are not limited to): • • • • • • Passport http://www.pptc.gc.ca/passports/how_obtain_e.asp Health card http://www.health.gov.on.ca/english/public/pub/ohip/card.html Age of majority/BYID card http://www.lcbo.com/socialresponsibility/images/byid_application.pdf Citizenship card http://www.cic.gc.ca/english/applications/certif.html Permanent resident card http://www.cic.gc.ca/english/applications/prcard.html Student ID Card (colleges and universities) 6 ASPIRE provides information to persons who live with ASD, their families and caregivers in order to support their search for resources and their right to choose between them. Unless specifically indicated, we do not endorse any treatment, program, product or service. April 2005 Personal Identification with no photo: • Social Insurance Number http://www.hrsdc.gc.ca/asp/gateway.asp?hr=en/cs/sin/100.shtml&hs=sxn Birth certificate https://www.businesstemplate.gov.on.ca/esd/start.do Baptismal certificate (must bear an official seal) The church where your child was baptized can supply you with a baptismal certificate. If you do not know the specific church, write the central office of your religious denomination in that city. They may have duplicate records. • • When Should We Begin Planning for Transition? Preparing for transition should begin very early in children's lives and continue until they are able to be on their own. The parents' role is to help their children gradually to achieve mastery of the skills necessary for functioning independently. Here is a suggested timeline for transition activities. Transition Timeline Age Transition Activity 0-2 Begin Financial Planning Set aside money to assist your child when he or she makes the transition to adult living. Have a will written and revise it as necessary. Encourage Language and Communication Assist your child in learning some means of communication; the more vocabulary that is understood and expressed, the better. 3-5 Involve Your Child in Social Activities Enrol your child in preschool, religious education, cooperative play groups, and/or day care so that the child gets experience socializing with others. 5-6 Seek Inclusion Consider very carefully what type of schooling your child will receive. Make sure that he or she is included as much as possible in the typical school program. Regular kindergarten in your neighbourhood school should be the first option to explore. 6-11 Expect Your Child to Participate Have your child do regular chores as part of the family's activities. Involve your child in neighbourhood and community activities, including such things as scouts, swimming lessons, story hour at the library and so forth. Invite children to your home and make it a 7 ASPIRE provides information to persons who live with ASD, their families and caregivers in order to support their search for resources and their right to choose between them. Unless specifically indicated, we do not endorse any treatment, program, product or service. April 2005 pleasant place for all types of children to visit. Teach Your Child Life Skills Assist your child in learning money management and shopping skills. Make your child responsible for good grooming and selection of clothing to wear. Teach your child to make simple meals and wash clothes. Begin Sex Education As your child grows and matures; help him or her to understand human reproduction and sexual development as a normal part of growing up. Make Your Child Aware of Safety Issues Some children with disabilities are vulnerable to exploitation because they do not have the ability to sense danger or predict consequences. It is important to teach your child how to protect himself or herself from harm. Begin early to teach your child how to avoid dangerous situations, what to do in emergencies, and who to call on for help. Teach Your Child About His/Her Disability As soon as your child is ready, provide information about his/her disability. Encourage your child to "take ownership" of the disability and begin to advocate for himself or herself. Include your child in the IEP process as early as possible. 1214 Functional Skills vs. Academic Skills As your child enters Grades six and seven, give some thought to how much time in school should be spent on academic skills and how much on functional life skills. Some children will need to have emphasis in their schooling shift to functional skills that prepare them for the adult world. Encourage Your Child to Work Have your child do volunteer or paid work in the home, neighbourhood or community. Assist your child in developing good work habits. 1418 Teach Your Child to Use Public Transportation If your community has public transportation, teach your child to use it. Encourage your child to get to places in the community on his/her own. Consider the Type of High School Program Your Child Will Pursue Consider carefully your child's options for high school education. Decide at the outset what type of diploma your child will earn and when he or she is likely to graduate (e.g., at 18 or later). Encourage community based job training and life skills if these are appropriate activities for your child. Involve your child in all decision-making. Begin Formal Transition Planning at School Be sure that your child has a Transition IEP that addresses academics, vocational and living skills - whatever your child needs to make a successful transition. Begin to involve adult service agencies if your child will need these kinds of supports either short or long 8 ASPIRE provides information to persons who live with ASD, their families and caregivers in order to support their search for resources and their right to choose between them. Unless specifically indicated, we do not endorse any treatment, program, product or service. April 2005 term. Continue Your Child’s Involvement in Community and Neighbourhood Activities Identify your child’s strengths, abilities and talents, and incorporate them into programming decisions. Recreation/leisure pursuits are essential for personal well-being. 1821 Encourage Steps Toward Independence As appropriate, encourage gradual moves toward greater personal independence and self-care. Encourage your child to find a job in the community or to pursue postsecondary education or training. Support your child in establishing an appropriate living arrangement and becoming involved in leisure activities in the community. Take on the role of coach on the sidelines and let your child become the decision-maker. How Can We Foster Independence in Our Child with Special Needs? Prepare your child at home for the new challenges he or she will face in adult living. Above all, foster as much independence as your child is capable of achieving. Here are some suggestions for helping your child to become as independent as possible. • • • • • • • • • • • • Devise realistic household chores and insist upon completion. A small child can dust chair legs, baseboards, and wash windowsills. Teach basic cooking skills. Microwaves and easily prepared foods make simple cooking possible for practically everyone. Expect children to accept consequences. Excuses are not going to help when they reach adulthood. Children need practice in accepting responsibility for their behaviour. Allow children to take risks. They will learn by trial and error their own style of compensation. Give them the joy of accomplishment, of living with the results of their own decision-making. Help them to cope with the results of an error in judgment and don't penalize them by saying "I told you so." Don't set a double standard for children in the family. Expect all of the children disabled or not to conform to certain basic rules for courtesy and moral behaviour. Don't allow the child with disabilities to think he or she deserves special treatment. Try to make his or her routine as much like that of the rest of the family as possible. Teach social skills to your child with a disability. Remember that it is hard to be a friend of someone who doesn't have appropriate social skills. Encourage the child to work at a community job or a job in the home or neighbourhood (volunteer work is helpful as well as paid employment). Stress good work habits like being on time, completing tasks, and doing work neatly. Be sure that your child socializes with non-disabled individuals as well as individuals with disabilities. Have your family interact with families who do not have children with disabilities. Allow your child to develop as many practical skills as possible, including such things as driving (even if it takes extra lessons), music appreciation, or sports. Help your child to set realistic goals. 9 ASPIRE provides information to persons who live with ASD, their families and caregivers in order to support their search for resources and their right to choose between them. Unless specifically indicated, we do not endorse any treatment, program, product or service. April 2005 • • • • • • • • • • • • • • Let your child make as many decisions for himself or herself as possible. This will give the child personal management skills necessary for adulthood. Don't allow your child to manipulate you. Manipulative behaviour interferes with achieving maturity as an adult. Involve your child in ordinary activities of running a home like mowing the lawn, taking out the trash, learning to fix a lamp, hanging pictures, doing the laundry. The child may not be physically able to do all of these tasks, but knowing how they are done is important. Encourage money management, budgeting, and saving. Encourage your child's sense of humour. Make laughter part of every day. Help your child to develop leisure time skills like participation in sports, daily exercise, hobbies, computer or table games. Teach your child to think of others remembering birthdays, saying thank you, volunteering to help, listening to others. Develop your child's conversational skills. People are boring who can only talk about their disability or who keep bringing the conversation back to themselves. Provide sex education. Concentrate on the child first and the disability second. Model and monitor good grooming habits. Teach as many personal care skills as your child can learn and teach them when your child is young. If your child is going to require personal care services for a lifetime, allow another person outside the family to care for his or her personal needs as the child becomes a teenager. Make a determination about guardianship. Plan financially, including making a will (inquire about the Absolute Discretionary (Henson) Trust), getting a Social Insurance Number for the child, and applying for Ontario Disability Support Program (ODSP) when the child reaches 18 (age 16 for employment supports). A few sample resources: Estate planning for beneficiaries with disabilities in Ontario http://www.archlegalclinic.ca/publications/disorders/A73_2003_002616/12_estatePlanning.pdf Absolute Discretionary (Henson) Trust http://www.specialneedsplanning.ca/tools.html Independence Day Exercise Directions: Mark two areas with an X where you think your child is or could be the most independent and mark two areas with a à where your child will need the most work to become independent. Put a star by the area where you will have the most trouble letting go. _____ Personal safety _____ Community mobility 10 ASPIRE provides information to persons who live with ASD, their families and caregivers in order to support their search for resources and their right to choose between them. Unless specifically indicated, we do not endorse any treatment, program, product or service. April 2005 _____ Recreation/leisure activities _____ Dressing and personal appearance _____ Health and hygiene _____ Sexual maturity _____ Social maturity _____ Emotional maturity _____ Household skills _____ Meal preparation _____ Money management and budgeting _____ Employability _____ Work habits How Long Does Transition Take? The only answer to this question is: it depends. Obviously, the amount of time required varies by individual and by circumstances. However, as a rule of thumb, parents should expect that it might take longer for a child with disabilities to make the transition than for typically developing children. For example, it is common for young people with disabilities to take one transition step at a time; first venturing out to take a job, but still living at home. In phase two, the child may then move out of the family home after becoming well established on the job. This step-by-step process may take several years longer than it would for a non-disabled young adult. Practically Speaking, How Does Transition Occur? There are basically three ways that transition occurs: (1) using personal and family connections and no public services, (2) using time-limited public services, or (3) utilizing lifelong supports. Transition without Services Many young people, including those with disabilities, make the transition from school to work and adult living without using any assistance from public or private agencies. Some individuals obtain employment at the end of high school programs using contacts gained through previous work experience. Others attend postsecondary educational institutions and gain skills that lead 11 ASPIRE provides information to persons who live with ASD, their families and caregivers in order to support their search for resources and their right to choose between them. Unless specifically indicated, we do not endorse any treatment, program, product or service. April 2005 to employment. Still others locate their own jobs through family contacts, neighbourhood networks, or short-term volunteer work. Time-Limited Services Other young people make the transition through the use of time-limited services. Time-limited services are those, which last for a particular amount of time, usually long enough to help the individual gain employment, further education, or greater independence. Examples of timelimited services are vocational rehabilitation, job training programs, and postsecondary student support services. The presence of a disability often qualifies an individual for time-limited services or creates special support for participation in job-related training. Vocational Aptitude. Vocational interests begin to stabilize during the middle teen years so it is helpful for students to take general aptitudes that will assist them in defining broad career areas, which have potential for them. Vocational interests are often assessed using groupadministered verbal interest inventories such as the Occupational Interest Survey Form DD (Kuder & Diamond, 1985) and the Self-Directed Search (Holland, 1985). Be sure that your child has an opportunity while still in high school to take an aptitude test and that the results of the test are explained to you and your child. Vocational Rehabilitation. Vocational Rehabilitation (VR) services are a publicly supported, timelimited program designed to help people with disabilities find work. Counsellors typically begin working with their clients during the student's senior year in high school. Once an individual has been found eligible for vocational rehabilitation services, VR will provide support and training until the person gets a job and then the VR services will be ended. In addition to job training and placement services, VR may also fund the purchase of equipment, tools, clothing or uniforms that are necessary for employment, and may also pay for transportation costs, medications, eyeglasses and other similar items needed to make employment possible. Daily Living Assistance Independent Living Centres (ILCs) are another source of time-limited transition support. ILCs assist persons with disabilities by providing training on the specifics of living independently; including advocating for services, seeking physical access, acquiring adapted equipment, locating housing, or using public transportation. ILCs also have peer-mentoring programs, which link successful adults with disabilities to young people who are just making the transition to adult living. These adult mentors can show their protégés how to "navigate" in the community and take care of daily activities. Independent Living can begin working with an individual while that person is still in high school and may provide follow-up services when the individual begins to live in the community as an adult. ILCs can also assist with referrals to other adult service agencies. Website: http://www.cailc.ca/ 12 ASPIRE provides information to persons who live with ASD, their families and caregivers in order to support their search for resources and their right to choose between them. Unless specifically indicated, we do not endorse any treatment, program, product or service. April 2005 Community Living Ontario is a source of lifelong supports for individuals with developmental disabilities. Local associations provide direct services and supports to individuals and their families so that people may plan their future as productive community citizens. Community Living Ontario supports this activity by linking local associations with the resources and information they need, and by offering training and consultation in the areas of family support, education, employment, rights, participation, advocacy and self-planning. Website: http://www.communitylivingontario.ca/index2.html For a list of additional transition supports in Ontario, please consult http://www.ont-autism.uoguelph.ca/transitions-2005-04.html What Should I Do If My Child with Disabilities Wants to Go to College? Many students who have been served in special education decide to continue their education past high school. For a student to become successful in postsecondary settings, the high school program can contribute valuable opportunities, such as the following: • Developing student's study skills and learning strategies. • Arranging job tryouts allows students opportunities to evaluate different career and vocational options. • Arranging needed accommodations for college entrance exams. Students are entitled to assessments that do not penalize them for their specific disabilities. These accommodations include extended time, a reader, a scribe, a separate testing area, or shorter test sessions. The important thing is for the students to learn which accommodations work best for them and gain the needed documentation to support their requests for the accommodations in standardized testing, and, later, college classes. For help with documentation, your child can consult with the high school guidance counsellor. • College admission does depend on having at least the minimum qualifications for entrance. Because a student has a disability does not mean that all typical entrance requirements will be waived for him or her. Just like everyone else, students with disabilities can go to college if they have the intellectual capacity and educational background that prepares them to do well. Students who do not meet the minimum entrance requirements can enrol for college courses on a non-credit or pass/fail basis. Such students can audit classes or participate in non-academic college activities as a way to gain experience or be involved in age appropriate activities. • Identifying colleges that provide educational programs relevant to career interests. For any student seeking college admission, the planning should begin early in high school. For the student with disabilities, the choice might be more difficult because of issues related to special admissions and ensuring that the needed support services are available. Matching the desired educational program and level of needed support services is an important step in college selection. College directories typically list the types of student supports available. Most campuses have student support centres where eligible students can go to take tests 13 ASPIRE provides information to persons who live with ASD, their families and caregivers in order to support their search for resources and their right to choose between them. Unless specifically indicated, we do not endorse any treatment, program, product or service. April 2005 • • • orally, receive assistance with note taking or reading textbooks. Many campus libraries have screen readers available for blind or print impaired students to use. Computer laboratories will sometimes also have available adapted keyboards and other access devices. Identifying the types of accommodations and support services that the student needs because of his or her disability. Colleges do not provide special education, but they do provide support services to assist students with disabilities. Provision of services is based on the individual institution's own choice of models. For this reason, it is very important for a student with disabilities to find out the specific supports offered in any particular postsecondary school. Typical supports include registration priority, note takers, interpreters, tutoring, special classes, and liaison with faculty, community liaison, and support groups. To be eligible for these services and accommodations, a student must have proof of disability, such as a recent psychoeducational assessment or special education records. Assistance in the application process. Applying to colleges and for financial aid packages can be a daunting task, especially for students with disabilities. High school guidance counsellors and resource teachers can be helpful in assisting students with filling out applications and writing the required essays. There are some college scholarships available for students with specific disabilities, especially sensory impairments like blindness or deafness. Directories of college scholarships provide information about disability-related financial aid. Assistance in preparing the documentation that the student can carry to the college. The high school setting provides many protections and coordinated services that are greatly reduced, if not eliminated, once the student graduates from high school. Documentation of the history of the disability and effective interventions represents a valuable resource that can guide college administrators and counsellors in working effectively with students and reducing the apprehension and frustration they encounter in learning a new system. This documentation should include results of a recent comprehensive evaluation, a summary of previous evaluations, and, most important, information on the type and extent of services that have been provided. Three sample resources: Special Needs Offices at Ontario Universities http://www.osca.ca/spneeds-u.htm Special Needs Offices at Ontario Colleges http://www.osca.ca/spneeds-c.htm The National Educational Association of Disabled Students (NEADS) http://www.neads.ca/ Long-Term Support Another way that some young people move into the world of work and adult living is through programs which provide on-going support throughout the individual's life. In the past these 14 ASPIRE provides information to persons who live with ASD, their families and caregivers in order to support their search for resources and their right to choose between them. Unless specifically indicated, we do not endorse any treatment, program, product or service. April 2005 ongoing support services have been limited to group homes, sheltered workshops, and work activity centres. Now there are also less segregated, more community-based options for longterm support in employment and in living arrangements. For example, supported work programs provide training and support for disabled individuals working at regular jobs in the community. A job coach may accompany the individual to the job, teach the individual job tasks, and continue to check back on the individual's progress over an extended period of time. Besides long-term services, which deal with employment, there are also programs that provide housing for individuals with developmental disabilities. These housing opportunities range from supported living in apartments, to supervised living in foster care, or to congregate living in adult group homes. Supported living is a residential option, which allows a program of supports to be developed around the individual needs of the client. Supported living programs assist individuals living in apartments or houses, sometimes with roommates or sometimes living alone. Assistance in supported living may include help with budgeting and money management; assistance with time management; or with daily living skills like cleaning, cooking, and doing laundry. Parents may also choose to develop private options for employment and residential care. For example, it is possible to hire job coaches privately. However, this can be expensive because parents may have to pay for job coaching indefinitely unless the individual makes enough money on the job to pay the job coach's wages. As a residential option, parents can purchase houses or condos for their children. If the adult child can live without supervision or with minimal supervision provided by the family, this private living arrangement can work well. However, if the individual requires extensive supervision or monitoring, this can be a perpetual expense for the family and may limit the value of a private purchase of housing. Is There Funding Available To Assist With Improvements In Making A House Accessible To People With Disabilities? Home and Vehicle Modification Program The Home and Vehicle Modification program receives funding from the Ministry of Community and Social Services and is administered by the Ontario March of Dimes. The program provides up to $15,000 towards the cost of home modifications to residents of Ontario. For more information please contact: The Home and Vehicle Modification Program 700 Richmond St., Suite 310, London, Ontario N6A 5C7 Toll-Free Tel: 1-877-369-HVMP (4867) Fax: (519) 642-7665 E-mail: hvmp@dimes.on.ca 15 ASPIRE provides information to persons who live with ASD, their families and caregivers in order to support their search for resources and their right to choose between them. Unless specifically indicated, we do not endorse any treatment, program, product or service. April 2005 Or visit the March of Dimes website at: www.dimes.on.ca/programs/access_hvmp.asp?sect=access The Canada Mortgage and Housing Corporation’s Residential Rehabilitation Assistance Program (RRAP) This program pays for repairs and accommodations in residential settings and homes. The program offers financial assistance to homeowners and landlords to undertake accessibility improvements to modify dwellings currently occupied or intended for occupancy by low-income persons with disabilities. For more information, visit the website at: www.cmhc-schl.gc.ca Or contact the toll-free number at: 1-800-704-6488 or E-mail at: rrap_Ontario@cmhc-schl.gc.ca What assistive devices are available to support people with disabilities? Assistive Devices Program of the Ministry of Health and Long-Term Care The Ontario Ministry of Health and Long-Term Care runs the Assistive Devices program (ADP) to help people who have long-term disabilities receive needed equipment and supplies. Any Ontario resident who has a long-term physical disability and a valid Health Card issued in his or her name is eligible. For more information, visit the following website at: www.health.gov.on.ca/english/public/pub/adp/about.html or call the Ministry of Health and LongTerm care at: 1-800-268-1154 (Toll-free in Ontario only) In Toronto, call 416-314-5518 TTY 1-800-387-5559 Hours of operation: 8:30 a.m. – 5:00 p.m. E-mail: infomoh@gov.on.ca Municipal Social Services Municipalities offer a variety of social services. Please consult your local municipality listed in the Bell Telephone Directory Blue pages for more information. Being On a Waiting List for Years Sounds Frustrating. Is There Anything a Parent Can Do to By-Pass the Waiting List? Parents can take the future into their own hands and try to create some options for their children instead of waiting for slots in the publicly funded programs. Here are some ideas to consider: Start your own business Some parents have been quite successful in creating their own businesses in which their son or daughter with disabilities can participate. Such things as farming, retail sales, small manufacturing, restaurant, bakery, photo processing, or photocopying businesses have worked well. 16 ASPIRE provides information to persons who live with ASD, their families and caregivers in order to support their search for resources and their right to choose between them. Unless specifically indicated, we do not endorse any treatment, program, product or service. April 2005 Pro: The positive aspects of this option are that work is available for the individual with disabilities under the close supervision of tolerant family members and co-workers. Con: Provisions have to be made to continue the business and the employment of the individual with disabilities when parents are no longer available to supervise the operation. There are also risks in any private enterprise, and a start-up business may fail. Hire a job coach privately There are individuals with experience in coaching people with disabilities on the job. These job coaches can sometimes be hired privately at an hourly rate to supervise a person with disabilities who is working in the community. Pro: The advantage to a private job coach is that there is no waiting for a slot to open up. The parent can keep paying the job coach to provide support as long as support is needed. Con: Private job coaches usually do not have professional liability insurance to cover any problems, which may arise on the job (e.g., breakage, damage to equipment). Parents might find themselves libel for damages caused by their adult child on the job. Also, hiring a private job coach means that parents may have to continue paying for this option as long as it is necessary for the adult child to have job supervision or support. Purchase housing Parents have chosen a number of options to create housing opportunities for their adult children. Some have purchased houses with apartments. The adult child lives in part of the house and a boarder occupies the apartment. Sometimes the boarder receives a reduced rent in return for providing some level of supervision or assistance for the individual with disabilities. Some parents have banded together and created a private group home occupied by two or more individuals with disabilities living together and supporting each other. Sometimes the parents also pay for a supervisor to oversee the private group home. Some individuals with disabilities purchase their own houses or duplexes and live independently with the support of a personal care attendant or family assistance. Pro: Providing private housing eliminates waiting, and it also allows the family to choose living accommodations in the location they prefer. With private options, the individual with disabilities can decide to live alone or with a roommate or a group of people. Con: Initial purchase of housing can be expensive. It can be difficult to find individuals to provide long-term supervision if that is needed. Paying for supervision in perpetuity is usually beyond the means of most families. Roommates sometimes turn out to be problematic. With a private purchase of housing, there has to be ongoing financing for paying taxes and for maintaining the property. 17 ASPIRE provides information to persons who live with ASD, their families and caregivers in order to support their search for resources and their right to choose between them. Unless specifically indicated, we do not endorse any treatment, program, product or service. April 2005 Time-Limited Funding Options When a young adult is on a waiting list for services from the Developmental Disabilities Program, parents can make use of time-limited services while waiting for an opening in DD services. For example, the individual could receive time-limited services from Vocational Rehabilitation for job assessment, development and training. While on the job, the individual could make use of various employer incentives to help with wage reimbursement. Pro: The advantage to taking this approach is that the individual is doing something while on the waiting list. The individual is maintaining work-related skills and learning new ones on the job. Getting started on the work process may make the individual a more desirable candidate for adult services because he or she has already had work assessment, training and experience and will require less support from an adult service agency in the future. Con: The downside of this approach is that when the individual is in time-limited services, he or she will not be seen as being "in crisis." Others on the waiting list for DD services may receive higher priority for slots because there is greater need for a placement or support services. If My Child Is Going to Need Adult Support Services, What Do I Do First? While your child is still in school, you need to use school resources to assist with planning and teaching your child the skills necessary for transition. Ask your child's special education teacher or guidance counsellor to supply you with information about future options for your child. When you and the school staff meet to develop the Individualized Education Program (IEP), discuss specific ways to prepare for your child's transition. The IEP should include goals and objectives to teach functional skills which your child will need after leaving school. Go to visit adult programs that may be suitable for your child. Identify the environments where your child is likely to be successful as an adult. Ask your child's special education teacher to include representatives of the agencies, which may provide services to your child to attend IEPs during your child's last years of high school. Overall, What Are the Most Significant Barriers to Successful Transition? No matter what the disability or the level of severity of disability, young adults with disabilities report that the most significant barrier in adult living is social isolation. When young people are out on their own for the first time, they quickly discover that making friends and having a social life is critical to their happiness and well-being. When young people are still in school, social interactions take place on a daily basis, sometimes without much effort on the part of the student with a disability. In the adult community, however, young people have to be active in seeking out connections and ways to belong. To assist a young person in making the transition to an active adult social life, it is important to begin creating a network of social support while the individual is still in school. This network 18 ASPIRE provides information to persons who live with ASD, their families and caregivers in order to support their search for resources and their right to choose between them. Unless specifically indicated, we do not endorse any treatment, program, product or service. April 2005 might include relatives and family friends, connections to a church or religious organization, and contacts within public recreation programs (e.g., YMCA or YWCA, community sports). Young people need practice during the teenage years in making social arrangements, inviting friends to participate in activities like going to the movies or a baseball game, and participating in community activities like volunteering with civic projects, joining a political campaign, or being involved in hobbies. What About Attitudinal Barriers? Though public attitudes toward disability have become more accepting in the past twenty years, young people will still encounter prejudice toward people with disabilities. As they grow up, an important set of coping skills to learn is how to react when they encounter prejudice. Is this a time to educate a person who is ignorant? Is this a time to assert rights, which are guaranteed in law? Or is this a time to shrug it off and carry on with good humour and self-confidence knowing that disability is not the defining feature of a person's nature or character? Encountering prejudice is never pleasant, but it is a fact of life for people with disabilities, particularly when those disabilities are visible. Individuals have to come to terms with prejudice and deal with it in ways that are natural and comfortable for them. Parents can help their children face prejudice by being up front about its existence and matter-of-fact in dealing directly with prejudice when it occurs. The one thing that parents should not do is attempt to protect their children from prejudice by keeping them sheltered from encounters with the public. Children learn how to cope with unpleasant remarks or prejudicial treatment by observing how their parents respond to these situations and deal with them effectively. Children with disabilities need to know that having a disability is not a reason to feel ashamed or to accept abuse or denigration. Facing prejudice in constructive ways helps young people to develop skills and feel more personally competent and confident. What Are Functional Skills? Functional skills vary according to individual students' needs and capabilities. Some students will need functional academic skills while others will need greater emphasis on self-help or vocational skills. In the past, much of what a special education student learned was determined by the academic program in regular education or by the sequence of skills that make up "normal" development. For example, a student with learning disabilities may have been working for several years on elementary level reading skills. This student has been moving step-by-step through the typical developmental curriculum in reading, but has not gotten very far. When that student enters high school, decisions have to be made about whether continued instruction in reading is worthwhile 19 ASPIRE provides information to persons who live with ASD, their families and caregivers in order to support their search for resources and their right to choose between them. Unless specifically indicated, we do not endorse any treatment, program, product or service. April 2005 or if the student's time would be better spent learning vocational skills. The question is: Will he learn enough by the time he finishes high school so that he can get a job and live independently? Would his time be best spent on reading or on some other skill? Planning for transition involves looking at the skills a student will need to become a functioning adult and designing a program, which develops those skills during the time that the student has in school. Identifying Functional Skills Directions: Number in order your choices of the five most important skills for functioning in the adult world. __________ A. Multiplying decimals __________ B. Riding public transportation __________ C. Asking for help __________ D. Mastering skills like cooking, cleaning & shopping __________ E. Making friends __________ F. Enjoying leisure time __________ G. Communicating feelings and needs __________ H. Displaying good work habits __________ I. Reading at a ninth grade level __________ J. Making decisions __________ K. Managing money __________ L. Being sexually responsible __________ M. Obtaining a job __________ N. Displaying good grooming and health habits __________ O. Choosing a marriage partner What Do We Plan for Transition? Planning for transition involves making decisions about how a student moves from school into the community. Such planning requires asking several important questions: • Does the student have the skills necessary to obtain employment? 20 ASPIRE provides information to persons who live with ASD, their families and caregivers in order to support their search for resources and their right to choose between them. Unless specifically indicated, we do not endorse any treatment, program, product or service. April 2005 • • • • • • • • • • • Is the student a candidate for postsecondary education (e.g., college, vocational training, military)? Does the student have special needs for transportation? Does the student have the social skills to behave appropriately on the job? In the community? Where will the student live? With parents? In an apartment? In his or her own home? With a roommate? In a group home? In adult foster care? Will the student be self-supporting or will he or she require support through government benefits? Family resources? Will the student require supervision for some or all decision-making? Does the student know how to use leisure time? Will the student have friends or make friends in the community? Has the student mastered independent living skills like cooking, grocery shopping, cleaning and so forth? Can the student manage money, pay bills, and keep a chequebook? Does the student require an attendant to help with personal care needs? Answers to these kinds of questions provide the basis for transition planning. If a student lacks skills in important areas of adult functioning, then the student can work on those skills while still in school and become better prepared to take on adult responsibilities after graduation from high school. What Are the Steps in Transition Planning? Preparation for a successful transition from school into the adult community is a step-by-step process involving the following: Best Guess. The process begins where the individual is now. Given what is now known about this individual, what is your "best guess" about where he or she is headed after high school? Is this person going to enter the job market after high school or continue with postsecondary education? Will this individual live in a group home, an apartment, a private home? Next Step. From where the individual is now, what is the most likely "next step" in his or her education? What choices are there for the location and style of education he or she might receive? Making choices about whether or not the individual will continue on with academic instruction, begin community-based training, work on life skills or some combination of all three depends on the person's needs, the challenges of the most probable environment after graduation, and the long range goals for the individual. The "next step" should be in the least restrictive environment for that individual; that is, the most normal situation in which the individual can function. In addition, the individual should spend as much time as possible with peers who do not have disabilities. 21 ASPIRE provides information to persons who live with ASD, their families and caregivers in order to support their search for resources and their right to choose between them. Unless specifically indicated, we do not endorse any treatment, program, product or service. April 2005 Next Environment. When a student changes classrooms, teachers, school buildings or programs, he or she faces new expectations and demands in the next environment. To prepare the student for those changes, it is necessary to take a look at the next environment and see what the requirements are for functioning there. What are the expectations for students without disabilities? What skills are critical to being able to function in the next environment? Strengths and Weaknesses. Where does the student stand right now? How is the student performing in the following areas: academic subjects, social behaviour, activities of everyday living, communication, personal grooming, work habits and so forth? Make a Match. Once you have decided what the student's strengths and weaknesses are, you can match his or her skills to what is required in the next environment. Are there skills the student must learn before he or she can take the next step? What training does the student need before moving on? Make a Plan. Planning a student's education becomes easier when you have already considered long-range goals and have made a decision about the next step in the educational program. You can develop an educational plan, which outlines the skills the student needs to learn in order to function in the next environment. Then you can link the goals and objectives in the student's Individualized Education Program (IEP) to predictions you have already made about the student's future. What Exactly Is an Individualized Transition Plan? As with everything else in special education, the power is in the IEP. The individualized Transition Plan (TP) has all of the required elements of an IEP plus information about: community-based instruction, vocational education, future placements, performance criteria in future environments, skills in non-academic domains and annual goals which are linked to future needs. The form used for an individualized Transition Plan is the same as the typical IEP except that there is an additional page where specific transition issues are addressed. The transition plan should emphasize the functional skills that a student needs to learn in order to be prepared for adult living. These functional skills may include: learning strategies and study skills; daily living skills like keeping a cheque book, buying groceries, cooking, and cleaning; and vocational skills like having good work habits on the job, getting along with the boss and other authority figures, having appropriate social skills in the community, learning to communicate needs and so forth. The Ministry of Education has prepared the following resource for families and educators. It includes sample transition plans, suggested timelines, and ways to integrate the planning process with other service providers. Transition Planning: A Resource Guide, 2002 22 ASPIRE provides information to persons who live with ASD, their families and caregivers in order to support their search for resources and their right to choose between them. Unless specifically indicated, we do not endorse any treatment, program, product or service. April 2005 http://www.edu.gov.on.ca/eng/general/elemsec/speced/transiti/transition.html What Should Parents Look for in a "Quality" Individualized Transition Plan? When looking over a transition plan, parents need to take into account the following: • Age-appropriateness of activities • Activities that are community-referenced • Functional skills • Skills that can be generalized (e.g., used in more than one environment or situation) • Activities that are based on the individual's preferences and choices. • Who Participates in a Transition Plan Meeting? The usual required members of the IEP team must be present: the parents, an administrator, a special educator, a regular educator, and the student. Parents must be notified in advance that the IEP meeting being scheduled is a Transition IEP. The student should be given an opportunity to participate in the meeting or to provide information for use at the meeting. During the student's senior year, the meeting may also include, if needed, representatives from agencies that provide adult services. The purpose of involving representatives from adult service agencies is to share information and make concrete plans for involving the student in appropriate adult services. Typical adult agency participants might be a Developmental Disabilities Program Case Manager, a caseworker from an Independent Living Centre, a mental health adult case manager, or a Vocational Rehabilitation Counsellor. The Ministry of Education has outlined the IEP requirements in the following document. The Individual Education Plan (IEP): A Resource Guide http://www.edu.gov.on.ca/eng/general/elemsec/speced/guide/resource/index.html How Can Parents Be Involved in Transition Planning? Transition planning is an important part of the IEP process, so parents need to give even more thought to the role they play in planning for their child's move from school into the world of work and adult living. • Here are some suggestions of avenues for parent involvement: • Understand exactly what is meant by the term transition and how your school is addressing this need. • Participate in and reinforce the transitional activities that your child is experiencing in the classroom and in community-based training. • Be sure that your child's IEP contains a sufficient number of transition-related objectives, beginning in the elementary years and continuing through junior high and high school. 23 ASPIRE provides information to persons who live with ASD, their families and caregivers in order to support their search for resources and their right to choose between them. Unless specifically indicated, we do not endorse any treatment, program, product or service. April 2005 • • • • • • • • • • • Help your child to develop good work habits and behaviours and the self-confidence needed to succeed on the job. Be sure the school is allocating enough time to the transitional needs of your child. Encourage local employers to consider providing training sites for students in vocational programs. Promote the hiring of individuals with disabilities by local businesses. Set an example yourself by hiring persons with disabilities in your business. Become well versed in legislation and services that affect transition from high school. Volunteer time to work with your child's transition program. Join a parent support group that discusses transition issues. Promote an understanding of the need for students with disabilities to acquire functional and self help skills. Nurture and promote connections between your child and family members and your adult friends. Personal connections often provide the best means for young adults with disabilities to find work in the community. See transition planning as a family responsibility and work cooperatively and actively with school staff to make your child's transition a success. How Should Students Be Involved in Transition Planning? Students should be involved in some way in making choices concerning their transition plans (TP). Most students with disabilities can attend their own TP meetings and express their views, but they will need some assistance in understanding the process and knowing how to contribute. While the concept of involving students in developing their own IEPs may seem difficult at first, in fact, students have much to gain from being involved. During the process, they can: • Learn more about their strengths and skills and be able to tell others what their goals and needs are; • Learn more about their disability, including how to talk about and explain the accommodations, which help them to compensate for the effects of the disability. Sometimes parents find it difficult to assist their children with self-determination skills. High school special education resource teachers (SERTs) or guidance counsellors are good resources for teaching these skills. If you would like staff assistance with teaching your child self-determination skills, contact the school and make self-determination skills part of your child's transition IEP. How Can Students Be Involved in Their Own Transition Plan (TP)? As soon as possible, students with disabilities should begin to attend their own TP meetings. In advance of the meeting, parents can discuss the TP meeting format, the issues which will be discussed, and who will be at the meeting. 24 ASPIRE provides information to persons who live with ASD, their families and caregivers in order to support their search for resources and their right to choose between them. Unless specifically indicated, we do not endorse any treatment, program, product or service. April 2005 At first the student may want to attend only part of the meeting and to be present as just an observer. Gradually, over time, the student may feel more ready to be a participant. When the student voices interest in participation, it is sometimes helpful for the student to write down what he or she wants to share. The process of preparing in advance helps the student to sort out thoughts and become more articulate about what is important to him or her. Some young people will not be able to participate in the full TP meeting, but these students can sometimes be interviewed separately and their ideas can then be brought to the meeting by parents or the student's teacher. There are specific transition interview questionnaires, which can be used to help students identify their choices and preferences for the future. In any case, it is important for young people to think about their own futures and to be given an opportunity to articulate their hopes and desires for further education, careers, and adult living. When students are involved, they have a greater sense of ownership in the plan and a deeper commitment to working on the goals contained in it. How Are Self-Determination Skills Best Taught? Involving students with disabilities in the planning process is not something that occurs automatically. Most young people, whether they have disabilities or not, will need help with learning the skills necessary for self-determination that is, thinking and planning for themselves. The following are typical self-determination skills: Personal goal setting. Goal setting involves answering those difficult questions like: What do I want to do? Where do I want to live? How do I want to go about getting out on my own? Coming to terms with disability and recognizing strengths and limitations. Adolescence is a time when young people develop their sense of personal identity. For youth with disabilities, their identities include having a disability. At some level, all young people with disabilities have to come to terms with how their disabilities affect body image, sense of competence, and concepts of personal integrity and independence. Some young people have to struggle with facing a lifetime of personal care assistance from family members or paid assistants; others have to recognize that they will have to use compensatory skills or adaptive equipment in order to conduct their daily lives; still others will have to come to terms with taking medications or enduring treatments that allow them to function and participate as normally as possible in daily life. Often parents have taken some or even all the responsibility for coping with their children's disabilities. As the child reaches the time in life when he or she will be entering the adult world, parents have to let go of some of their support and vigilance while the child takes over more and more personal responsibility. This can be a difficult process both for parents and for their children, but it is a necessary one in order for the child to achieve as much independence as possible. Taking risks. Moving into adult living means that young people must make choices and take risks in areas that may not be as safe and nurturing as their home environment with parents. 25 ASPIRE provides information to persons who live with ASD, their families and caregivers in order to support their search for resources and their right to choose between them. Unless specifically indicated, we do not endorse any treatment, program, product or service. April 2005 Part of growing up for all children involves venturing out and making mistakes, learning from mistakes, and going on. Asking for help. Youth with disabilities have to learn gradually how and when to ask for help. Often for them, this is the hardest part of growing up. Many young people with disabilities want to be fiercely independent. Just like other teenagers, they do not want to look or act different from anyone else. There are, however, times when it is absolutely necessary for young people to face their actual differences from others and ask for help when needed. Asking for help may mean physical assistance with simple things like opening doors or carrying a lunch tray, or it may mean harder things like asking a teacher to shorten an assignment or explaining to a boss that directions need to be repeated. Using support services. More and more support services are available to assist people with disabilities, but these supports are useless if the individual does not take advantage of them. Students with disabilities have to be taught how to use assistive devices and adaptive equipment. They have to learn about where special services (e.g., special transportation, tutoring services, low vision clinics) are located and how to access them. They have to learn how to plan their time so that they can take advantage of support services and still get everything done that is expected of them at school or on the job. Using support services takes practice and a good sense of humour. The high school years are a good time to practice using supports when there are still people around to provide instruction and assist with problemsolving. Articulating needs. Sometimes the hardest part about seeking support is being articulate about what is needed. Many young people with disabilities need practice in explaining what they need to peers, adults, employers, teachers, and members of the general public. Doing self-advocacy. As students with disabilities reach adolescence, they need to learn gradually how to be advocates for themselves. As they are able, they must take on the roles of explaining to others their legitimate needs, responding to questions about their disabilities, and asserting their rights. Who Teaches Self-Determination Skills? Self-determination skills are usually taught by parents at home or by counsellors or teachers at school. Some high school programs offer courses in self-determination training; others incorporate self-determination skills into coursework. Sometimes parents feel the need to seek assistance from private counsellors in working through identity issues with their child. Often it is helpful for the teenager with disabilities to have the assistance of someone other than a parent such as adult friend, clergyperson, older sibling to sort out feelings about independence and self-advocacy. Parents, too, sometimes need outside help to assist them with issues of letting go. When a child with disabilities is nearing the time for leaving home and becoming less dependent on parents, 26 ASPIRE provides information to persons who live with ASD, their families and caregivers in order to support their search for resources and their right to choose between them. Unless specifically indicated, we do not endorse any treatment, program, product or service. April 2005 the parents themselves may suffer some "withdrawal pangs." Taking care of a child with disabilities can be an enormous responsibility. The tendency on the part of parents is to be protective or even overprotective. When letting go must take place, parents may need emotional support themselves to weather this significant change in their lives. What Is Futures Planning? Futures planning is an informal process for making plans for an individual's transition into adult living. Futures planning focuses less on school requirements and special education and more on opportunities for people with disabilities to develop personal relationships, have positive roles in community life, increase their control of their own lives, and develop the skills and abilities to achieve these goals. Futures planning is more than just a plan; it is an ongoing problem-solving process involving people who have a commitment to the individual for whom the planning is taking place. In futures planning, a small group of people meets to brainstorm strategies for assisting an individual with disabilities to make a successful transition. This circle of support or personcentred team makes commitments and takes action to ensure that changes will be accomplished for the focus person. How Does Futures Planning Differ from the IEP Process? Personal Futures Planning (developed by O'Brien, O'Brien and Mount) can complement the IEP process in schools or the planning processes in adult services. A futures plan can help those involved with the focus person see the total person, recognize his or her desires and interests, and discover the individual's capacities and gifts. Typically, IEP meetings tend to focus on a person's deficits, even though some effort is usually made to mention strengths as well. IEPs are, for the most part, written from a deficit point of view what is wrong with the person and how are we going to fix it. Futures planning seeks to eliminate the pattern of looking for deficiencies. Through a simple process, it identifies and builds on the capacities of people with disabilities and on opportunities in the community. What Is Involved in a Futures Planning Process? If you would like to have one of these informal planning sessions for your child, you will need: Facilitators. Usually two are needed, one to interview the group and another to record responses. 27 ASPIRE provides information to persons who live with ASD, their families and caregivers in order to support their search for resources and their right to choose between them. Unless specifically indicated, we do not endorse any treatment, program, product or service. April 2005 Comfortable Setting. Futures planning meetings are usually held in a home or school setting. Wherever they are held, a relaxed, low-key atmosphere should be established. Focus Person. The focus person is the individual with a disability for whom the planning session is being held. Participants. The key people in the focus person's life should attend the planning meeting. Key people usually include a mixture of close friends, family members, neighbours, and friends from the individual's religious community, teachers, therapists or doctors. Time. A good futures planning meeting takes at least two hours. Newsprint and Markers. The recorder uses a process called "group graphics" to organize and portray the information from the group. This process helps the information "come alive" for the group. The facilitator conducting the meeting interviews the group and then the recorder records on newsprint all of the comments made by the group, using coloured markers, symbols and words. The recordings produce a series of pictures and symbols that are called "maps" and illustrate the patterns of a person's life. This graphic description becomes the foundation for the futures planning. Using graphic symbols in this way helps to stimulate creativity and to encourage participation by people who have difficulty with words. What Are the Parts of the Futures Planning Process? There are three steps in the Personal Futures Planning process. The first is the creation of a personal profile representing comprehensive information about the individual, including past events, relationships, places, preferences, and ideas about the future, obstacles and opportunities. The second step is the development of a plan for the person based on the information gathered from the group. The final step is the commitment by the group to form a network of support to help the person carry out the plan. There are many workbooks available to assist in the futures planning process. One example is PATH: A Workbook for Planning Positive Possible Futures, by Pearpoint, O'Brien, and Forest. It is available from Inclusion Press, Toronto, Ontario, phone: 416-658-536 Examples of possible resources: A Guide to Personal Networks http://www.lifetimenetworks.ca/facilitation/FacilitationGuide.doc The "Special Needs" Planning Group http://www.specialneedsplanning.ca/ 28 ASPIRE provides information to persons who live with ASD, their families and caregivers in order to support their search for resources and their right to choose between them. Unless specifically indicated, we do not endorse any treatment, program, product or service. April 2005 Planned Lifetime Advocacy Networks http://www.plan.ca/ Personal Support Networks News Bulletin http://www.ont-autism.uoguelph.ca/PSN-20041231.html 29 ASPIRE provides information to persons who live with ASD, their families and caregivers in order to support their search for resources and their right to choose between them. Unless specifically indicated, we do not endorse any treatment, program, product or service. April 2005 SUMMARY Making the transition from high school to adult living is a big step for any young person and especially so for young adults with disabilities. Parents play a major role in helping their children make this transition successfully. With advance planning, parents can prepare their children to be as independent as possible. Working closely with educators and other professionals, parents can ensure that their children learn the skills while they are still in school that will help them to find jobs and live productively in the community. Sample general resources: I’m Making It Happen (series of five workbooks about preparation for adulthood) Bloorview Macmillan Children's Centre Phone: 416-425-6220 X 3498 Email: gelliott@bloorviewmacmillan.on.ca Guide to Government of Ontario Programs and Services for People with Disabilities - 3rd edition http://www.equalopportunity.on.ca/eng_g/documents/Intro.htm Transition Initiatives and Supports For Individuals with Disabilities http://www.ont-autism.uoguelph.ca/transitions-2005-04.html Living With ASD Beyond Adolescence Autism Society Ontario http://www.autismsociety.on.ca/ School to Life Transition Handbook: Five Steps to Successful Planning Saskatchewan Association for Community Living http://www.sasked.gov.sk.ca/branches/children_services/special_ed/docs/schtolife/to_work.pdf Making choices for community living - A guide for self-planning. Jeffreys, M., & Sproul, P. http://www.communitylivingontario.ca/forsale.html A Place Called Home by Alison Ouellette http://home.cogeco.ca/~aco-web/ Programs And Services For Persons With Intellectual Disabilities by C. Tess Sheldon http://www.archlegalclinic.ca/publications/disorders/A73_2003_002616/08_intellectualDisabilitie s/index.asp Focus On The Future (planning folders) Networking for Success (planning manual) Windsor-Essex Family Network http://www.windsoressexfamnet.ca/ 30 ASPIRE provides information to persons who live with ASD, their families and caregivers in order to support their search for resources and their right to choose between them. Unless specifically indicated, we do not endorse any treatment, program, product or service.
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