"... I will fear no evil,
for You are with me;
and Your rod and staff,
they comfort me."
Psalm 23:4 NIV
Be encouraged that although the last school year of your special needs child may seem over-whelming again as you prepare emotionally to send your child out into the real word, the Lord is still there. Trust in Him to guide you and your child into the greater community.
If it is your child's last year of school, the IEP will have a new name. It will be called the "Transition Plan." It is during this time when the IEP Team (you, ot/pt principal, service coordinator, etc.) will look into services for the disabled "adult." IDEA ends when your child completes school (up to age 21) and this can be very frightening for the parent.
- Understand that your parent rights will terminate when the child turns 18 in most states.
- Understand and prepare to apply for Legal Guardianship for your disabled child when they are at least 17 years old because it takes time. The actual guardianship may not be completed in court until the 18th year, but because courts are busy, busy, busy, you want to file your paperwork ahead of time. You need to meet with an attorney in your area who specializes in Legal Guardianship/Family Law. You can check with your Parent Recourse Center and/or Disability Law Center for guidance and contact. This attorney should be available to you until the guardianship is in place. If you do not get guardianship over your child, it is rarely done after age 18. The state automatically becomes the guardian per se (ward of the court).
- Understand that you must pay for the Legal Guardianship process including attorney fees. Comparison shop around for reasonable cost. This is not a "free" service under IDEA or ADA. Plan ahead for this expense.
- Understand that if you are the Legal Guardian over your child, you can continue to make legal decisions for your child such as medical decisions, legal contracts, where he or she lives, etc.
- UNDERSTAND that if your child does not have a Legal Guardian, the state can make decisions for your child. If your child resides in a group home, the group home can also make decisions for your child, and if your child needs a medical procedure, the hospital can make the decision. In order to stay in your role as parent and avoid all the unnecessary stresses of life surrounding your special needs child, become his or her Legal Guardian promptly.
- Understand that if you are the Legal Guardian, you must be contacted by service providers, etc. and you make all the quality of life decisions for your child (i.e., shelter, finance, employment, etc.).
- If your child has mental retardation in any extent, you should become his or her Legal Guardian.
- At the Transition Meeting, you should plan what will happen to your child when he or she graduates from school. Do a thorough and complete investigation into all the services available in your area. States are not legally obligated to send your child to another county for services, etc. The state will offer only what they have and the individual may be asked to contribute to expenses. This is why the Service Coordinator is still there. Allow him or her to assist with creating the Transition Plan. The Transition Plan is the last plan in the school system for children with special needs and it may be referred to as the "Exit Plan."
- Based on the strengths of your child, create a plan that will offer the best choices for your young adult child with special needs and it will vary from child to child. If your child will be attending college or a trade school, this is the time to plan as well.
Once your child graduates from high school, he or she will enter into the adult world. He or she will no longer be able to attend EYS or take advantage of school programs, transportation, or protections! It is important to remember this when working on the Transition Plan. Be thorough in planning his or her day beginning with the first day after school graduation.
Remember, the Service Coordinator is there for the life of your child. It does not stop when the child graduates. Each year, you should still create an Individual Plan for the disabled person and family. This includes adult day program, vocational rehabilitation programs, job-training programs, camps, respite, public transportation, housing, housing modifications, adaptations such as wheelchairs or braces, nursing or one-on-one support person, etc. This is in addition to monthly benefits such as food and money from SSI.
If your child receives SSI, at age 18, the amount will be automatically adjusted considering the individual adult and not the wages of his or her parent. This could result in an increase in the monthly benefit amount, but typically does not result in a decrease in the amount. The best person to assist you with this process is a Social Security Representative. Due to the millions of persons the Social Security Administration serves, you may not receive notice about the change in your child's monthly benefit amount by the 18th birthday.
- Beware to pay attention to what changes the Social Security Administration makes for your child because each program (SSDI and SSI) affects the type of medical coverage your adult child with special needs will receive (i.e., Medicare v. Medical Assistance).
- The same rules and regulations of the Social Security Administration that applies to adults with disabilities, will now apply to your adult child with special needs. For example, you will need to enroll the child in a prescription plan and select a primary doctor/clinic, etc.
As long as the parent is receiving SSDI, so will the child with special needs. Once the parent stops receiving SSDI, the adult child with special needs will be rolled into the SSI program. Social Security Administration keeps track and handles this situation. Your child's monthly check should not be interrupted. Always check directly with the Social Security Administration with any questions, but your Service Coordinator may be able to answer some of your questions.
- Understand the Service Coordinator has absolutely NO control over decisions made by the Social Security Administration.
Remember in the last year of school, proms, senior trips, assemblies at school, etc. are very important to the special needs child just like any other child. He or she should participate fully (i.e., tuxedo, gown, limo, photos, announcements, etc.) as you can afford to. These high-school level functions can be written into the Individual Plan of Care with Service Coordination. Do not be too proud to ask if financial assistance is available that can be used towards senior activities. Your Service Coordinator may be able to tap into resources to help, but he or she may not. A reasonable request can be made for transportation to/from a senior event taking place when the school building is closed (i.e., mobility ride).
Remember, your service coordinator has access to many, many non-profits who may be able to help in so many different ways. You can also do independent searches/contacts.
REMEMBER, YOUR CHILD SHOULD HAVE A VOICE IN HIS OR HER TRANSITIONAL PLAN!
Be encouraged that the Lord's rod and staff will always, always guide you and comfort you. The Lord does not take His rod and staff away when your child leaves school. REMEMBER, there is no, NO cut-off point for using the Parent Resource Center. Stay connected to your Parent Resource Center and if possible, show your adult child how to use it for networking, etc.
Passing the peace,
Posted By: agnes levine
Monday, September 19th 2011 at 12:59PM
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