TRANSITION PLANNING

1. TRANSITIONPLANNING FOR DEVELOPMENTALLY DISABLED HIGH SCHOOL STUDENTS Created by Craig Ameel, Wheeling High School, Wheeling IL cameel@d214.org

2. “The future is now.” -George Allen There is no time like the present to start planning for your child’s future. With the many aspects of transition planning that you will face, getting started NOW is essential to having a successful transition plan. None of us are going to be around forever…so plan today and make your child’s future more secure.

3. Areas of Transition Planning • Initial Information • Residential • Employment • SSI & Medicaid • Insurance • Guardianship • Special Needs Trusts • Financial Planning • Social/Recreational • Selective Service

4. Residential Planning • Basic Information • Community Alternatives Unlimited • Options • Where to look • What you need to do

5. Residential Basic Information As your child’s advocate, you will need to investigate residential options in order to feel more comfortable in considering any placement, whether now or in the future. Points to consider: *Even the best laid plans may run into unexpected roadblocks. You may have planned for your child’s relatives to take them in if you are no longer around. However, as we all know, things come up and things change. People suffer illnesses or just life changes that may not allow them to care for and support your child. We all hope things will work out for the best, however, realistically we must plan for when things do not go as we wished. *Residential placements are running up to 10 years and beyond. Add 10 years to your child’s current age. That may be the first time you get a chance to have them become a member of a residential organization. While that may seem younger than you wish for them to move on, remember that you can always say no and put them back down lower on the list, for future consideration. However, what if something happens between now and that 10 years? Perhaps they will be ready to move on; perhaps you will also be ready to have them move on; perhapse life will determine there are no other options except to move on…the point is that it is better to have a plan in place and ready to go rather than to have no plan. Add 10 years to your age…how old will you be in 10 years? What about in 20 years? Will you still be able to provide the same level of care for your child that you do right now? Maybe…and maybe not. Your child’s future is worth considering and planning for all the bumps in the road that may occur.

6. Community AlternativesUnlimited • CAU is the clearing house for residential placement in our area. This means you must establish a file with CAU in order to eventually receive funding for various services available to them regarding residential, employment, and other services. CONTACT THEM TODAY to learn more! • You are free to and should pursue information about residential and employment placements before and while talking to CAU. This will make you a better informed advocate for your child. • You need to be aware of your options and also need to visit facilities and talk with staff in order to gain knowledge about the types of services offered residents, levels of housing in terms of independence, and where you feel your child would be most comfortable living. • To contact CAU: • 8765 W. Higgins, Suite 300 • Chicago, IL 60631 • Phone: 773-867-4000 Fax: 773-867-4165 • http://www.cau.org

7. Residential: Options A variety of options exist for disabled individuals. However, the options depend upon the individual, their level of functioning and independence, and may other factors. It is best to visit several facitilities, talk with their staff and others, and make an informed decision. The variety of options include: 1) living in a community setting as arranged by the individual or parent (i.e.,an apartment), 2) group homes, 3) Community Integrated Living Arrangement (CILA), 4) residential facilities (like Clearbrook or Lambs Farm), 5) a supported apartment site (for example those arranged by Resources for Independent Living), or 6) a group of parents getting together on purchasing a home/townhome and having it supported by a local agency. Again, the level, needs, and wants of your child will help determine which of these options are available and reasonable to pursue. Have a list of questions ready when you visit or call upon a facility. Some questions should be aimed at determining the various levels of housing offered, the financial structure of how you will be able to pay for residential matters, requirements to being considered, the length of the waiting list, and more. When you have such a list, use it to compare the responses you get from the organizations you contact.

8. Where to look Here is a limited list of local residential facilities and organizations to consider. There are more out there, which you can investigate. Avenues to Independence, Park Ridge, IL 847-825-6498 Clearbrook Center, Rolling Meadows, IL 847-870-7711

9. Employment • Basic Information • Office of Rehabilitation Services • Department of Developmental Disabilities • Options for Work • What you need to do

10. Employment: Basic Information Office of Rehabilitation Services Department of Developmental Disabilities: There are many levels of employment. Regular community jobs: Supported jobs: Workshop level jobs:

11. Employments: ORS (Office of Rehabilitation Services) The Office of Rehabilitation Services (ORS) of Illinois is in place to provide support in employment to individuals with disabilities. ORS focuses on students/young adults who are able to secure employment in the community. Those individuals who need a higher level of support with regard to employment are referred to the Department of Developmental Disabilities (DDD). District 214 has a relationship established with NSSEO (Northwest Suburban Special Education Organization) and thus, ORS. Greg Hill serves as the 214/NSSEO/ORS liaison, creating files on the District 214 students who qualify for help from ORS. The DDD does not provide nearly the level of support that ORS provides. However, Greg Hill is able to inform parents of what steps they need to take in order to look at obtaining workshop or highly supported jobs upon leaving the high school setting. Contacts: Office of Rehabilitation Services, Rolling Meadows, IL 847-253-6208 Greg Hill, NSSEO,

12. Employment: DDDDepartment of Developmental Disabilities The Department of Developmental Disabilities (DDD) of Illinois Contact them through the Office of Rehabilitation Services at 847-253-6208

13. Options for Work Community Jobs and Support: It is important to remember here that entitlement for employment and other services end when your child leaves the educational system. This can have a dramatic effect on your child’s opportunities for work. You have to take your child’s abilities and disabilities into account when looking at the vocational aspect of his/her life. If you truly feel your child is able to work in a community site, with or without support, then you can obviously pursue that idea. However, do not assume every employer is willing to hire every individual out there, regardless of their skill or lack of skill. They are not required to do so. In times of a tough economy, the reality is that for everyone, jobs are harder to come by. You can look to ORS for support if you feel your child is at the community job level. They will assess and determine what help and support they can provide. Supported Employment: Sheltered workshops and other organizations do provide supported employment. Whether these are provided through enclaves or other sites, there are some opportunities. Be aware that many sheltered workshops have various levels of employment, providing for a more capable worker of moving out of the workshop if their work merits it. Sheltered Workshops: The sheltered workshops in our immediate area are pretty much full to capacity. Spots open along the way, but it can be months before such a spot opens. Some parents, in cooperation with the school, have their child placed in the facility they feel most comfortable with, in terms of having their child work there beyond their high school years, during their final semester in school This has afforded some the opportunity to be available for accepting a position in the workshop should it open up before they are ready to leave school (say at 20 or 21). Parents have taken advantage of this, as often times, transportation and employment issues are open for a very short window. Knowing that the child is transitioning out of the school soon, taking advantage of such an opportunity is a key to their future.

14. Employment: What you need to do now! • Call your child’s case manager and inquire as to where your child is at on the employment timeline and what the general plan is for his/her vocational program • Take a realistic look at your child’s abilities with regard to work and their desire to work • If your child is going to be moving to a residential center, inquire about employment opportunities and vocational programming as part of their future living situation • If your child is out of the education system, contact ORS for further help and info • Remember that no individual is entitled to a job, but rather has the right to apply for a job, as does everyone else

15. Social Security Incomeand Medicaid • Basic Information • Social Security Income • Medicaid • Resources

16. Social Security: Basic Info Social Security Income Social Security contact information: Health and Disability Associates

17. Medicaid: Basic Info

18. INSURANCE • As we all know, insurance is a major concern for every individual; however it is especially important for individuals with disabilities. • In Illinois, you are able to continue your child on your insurance policy even after they are 18, 21 or leave the educational system. Howevver, in order to do this, you must notify your insurance company BEFORE your child is off your policy. • In your letter to your insurance company, be sure to cite Illinois Insurance Code (215 ILCS 5/356b) as supporting your legal right to extended coverage for your disabled child. • What about the medicaid vs. insurance idea????????

19. Guardianship • Many parents have concerns regarding the issue of guardianship as it relates to their child. They are concerned with both protecting their child, yet they have reservations over taking away the individual rights of their child. In this parents should know: • There are various levels of and types of guardianship. It is your choice as to what level of guardianship you wish to pursue. • You can either hire a lawyer to help you with guardianship • OR • You can pursue guardianship on your own…it is not an impossible task • CONTACTS • http://gac.state.il.us/osg/pg_indx.html • www.altonweb.com/cs/downsyndrome/spainguardian.html • http://lifecenter.ric.org/content/104/?topic=7&subtopic=245

20. Financial Planning • Basic Information • Special Needs Trusts • Resources

21. Financial: Basic Information Financial planning is something we have all thought about at one point or another. Even if you have taken action to plan for not only your future, but your child’s future, you should take the time to read this information.

22. Special Needs Trusts Special Needs Trusts (SNT’s) are very different from a regular trust. In fact, a SNT will enable you to provide for your child as you have always wanted to do. A regular trust will not be able to provide for your child the way you wish. If a regular trust is set up for your child, the state may well take the funds from that trust and use them for everyday living expenses, such as room and board. A SNT will allow you to designate how the funds of the SNT are used with regard to your child and their quality of life. With a properly structured SNT, the funds can be used for a montly trip to your child’s favorite barber, a yearly trip to a Cubs’ game, or any other item or event you wish your child to have. The language of a SNT is the difference between paying basic expenses and maintaining a quality of life for your child. In order to develop a SNT, you will need to find a lawyer who specializes in them. There are a few in the area that other parents of disabled children have used or you can contact the Illinois Bar Association for a referral. Be specific in your request for a lawyer who knows how to structure and write a Special Needs Trust.

23. Social/Recreational • Basic Information • The importance of continuing activities • NWSRA • Special Olympics • Center for Enriched Living

24. Social/Recreational The importance of continuing social/recreational activities It is vital for your child to continue participating in social and recreational activities when they move on from the high school setting. Parents, throughout the years, have noted the horrible regression their child experiences when they do not have social and recreational outlets. Think of how it would affect you if you never were able to talk to friends and neighbors? There is a tremendous negative impact on our students who move on from a social setting of a high school to an environment where there is little or no social contact or interactions. There are regressions in social language, age appropriate behaviors, liveliness, and more. Work sites do provide some social interaction, however, we all know we like to experience social and recreational fun outside of the work setting. So it is the same with your child. A decrease in language Much of the responsibility for having your child continue to engage in such activities will fall to you until they move to a different residential setting. However, it is very important that you realize the need for your child to maintain and even continue to grow socially through social and recreational activities. Your efforts to help them sign-up for a team or a class and your efforts to drive them to such events is, arguably, the most important thing you can do for your child, who is now an adult.

25. NWSRANorthwest Special Recreational Associationwww.nwsra.org/ • NWSRA offers a wide variety of social and recreational activities. • Sports, social, weekend trips, cooking, and more classes are offered through NWSRA. • Services are offered for kids, teens, young adults, and adults. • NWSRA will mail program guides • Contact NWSRA at 847-392-2848 for more information or www.nwsra.org/

26. Center for Enriched Living • The CEL is another organization where one can find social and recreational activities. It is especially accessible for the students on the northern end of District 214. • The CEL offers a wide variety of social and recreational activities: from cooking to anything else. • Contact the Center for Enriched Living at 847- or www.centerforenrichedliving.org/

27. Special Olympicswww.ilso.org/ • Your young adult can continue to participate in both individual and team sports. • Anyone can sign-up for both individual and team sports through Area 18’s Special Olympics office (ask for Jen or Karen) at 847-392-2842. • Wheeling H. S. and Hoffman Estates H.S. students can sign-up for team sports as a member of either an NWSRA team or the Wildhawks Alumni team. • Remember, Special Olympics is for athletes 8 to 80 years of age!

28. Selective Service • All men must register with the Selective Service upon turning 18 years of age. You can register either online at http://www.sss.gov/regist.htm or at your local post office.

29. Resource Page Below is a list of resources, which can be found online from this page. Please click on the link to access the Website.