Our mission is to enable and empower Louisiana families of individuals with disabilities through an effective coordinated network of Resources, Support, and Services.  Our vision is to ensure all individuals with disabilities have the opportunity to attend school, live, work and recreate in their community with typical peers.

Articles

 

Louisiana's New Part C Early Intervention System

The ChildNet Program has transitioned administration from the State Department of Education (SDE) to the State Department of Health and Hospitals (DHH). You may have heard about this program, which is officially called Early Steps. It is an early intervention system for infants and toddlers with disabilities and their families, with services being provided by private and public agencies. In July, DHH's Office of Public Health assumed responsibility for administering this early intervention program. Although this is only a change in the administration of the program, we believe the change will enable Early Steps to partner with other DHH programs that serve families with similar needs. Ultimately, the result will be a comprehensive, coordinated, family-centered system of educational and health services for Louisiana's infants and toddlers in need of early intervention and their families.

The SDE will remain integrally involved in serving eligible infants and toddlers. Children turning three will, in many cases, need the services offered by preschool special education programs throughout the state. Some local school boards will continue to offer early intervention services to children in their communities.

similar needs. Ultimately, the result will be a comprehensive, coordinated, family-centered system of educational and health services for Louisiana's infants and toddlers in need of early intervention and their families.

Thus the SDE will continue to play a major role in services to children from birth to age three. DHH is continually asking for input about improvements to the system from those who are involved. We will look to parents, professional, community agencies and members of the public as we strive to build upon the proven successes of this system. DHH and the SDE, in cooperation with the State Interagency Coordinating Council (SICC), will jointly develop a plan to keep you abreast of the progress of the Part C System. We welcome your input and ask for your support for Early Steps in its new home at the Department of Health and Hospitals. For further information, please log on to the program's web site at:
www.oph.dhh.state.la.us/ childrensspecial/earlyinterventionservices/index.html
OR call at 1-866-EARLY STEPS (866-327-7837).

Orleans and St. Bernard Parishes
2714 Canal Street, Suite 304
New Orleans, LA 70119
(504) 821-6661 Fax (504) 822-0943
E-mail : joan.semmes@rehabnrp.com

Jefferson and Plaquemines Parishes
4323 Division Street, Suite 208
Metairie, LA 70002-3179
(504) 324-1442 Fax (504) 457-0337
Toll Free (866) 207-2386
E-mail: earlysteps@fhfgno.org

East Baton Rouge, East Feliciana and West Feliciana Parishes
3060 Teddy Drive, Suite A
Baton Rouge, LA 70809
(225) 925-2426 Fax (225) 925-1370
Toll Free (866) 925-2426
E-mail: spoegbrl@bellsouth.net

Pointe Coupee, West Baton Rouge, Iberville and Ascension Parishes
3060 Teddy Drive, Suite A
Baton Rouge, LA 70809
(225) 925-2426 Fax (225) 925-1370
Toll Free (866) 925-2426
E-mail: spoegbrl@bellsouth.net

Asumption, St. John, St. Charles and St. James Parishes
2840 Airline Highway, Suite D
LaPlace, LA 70068
(985) 479-2430 fax (985) 479-2432
Toll Free (866) 234-0593
E-mail: marygibson@sw.rr.com

Terrebonne, Lafourche and St. Mary Pairshes
760 West Tunnel Blvd., Suite B
Houma, LA 70360
(985) 872-1830 Fax (985) 872-1841
E-mail: slassere@bellsouth.net

Lafayette, Iberia, St. Martin and Vermillion Parishes
P.O. Box 12213
New Iberia, LA 70562
(337) 359-8748 Fax (337) 359-8747
Toll Free (866)-494-8900
E-mail: teamfsrc@bellsouth.net

St. Landry, Evangeline and Acadia Parishes
P.O. Box 12213
New Iberia, LA 70562
(337) 359-8748 fax (337) 359-8747
Toll Free (866)-494-8900,
E-mail: teamfsrc@bellsouth.net

Assumption, St. John, St. Charles and St. James Parishes
2840 Airline Highway, Suite D
LaPlace, LA 70068
(985) 479-2430 fax (985) 479-2432
Toll Free (866) 234-0593
E-mail: marygibson@sw.rr.com

Terrebonne, Lafourche and St. Mary Parishes
760 West Tunnel Blvd., Suite B
Houma, LA 70360
(985) 872-1830 Fax (985) 872-1841
E-mail: slassere@bellsouth.net

Lafayette, Iberia, St. Martin and Vermillion Parishes
P.O. Box 12213
New Iberia, LA 70562
(337) 359-8748 Fax (337) 359-8747
Toll Free (866)-494-8900
E-mail: teamfsrc@bellsouth.net

St. Landry, Evangeline and Acadia Parishes
P.O. Box 12213
New Iberia, LA 70562
(337) 359-8748 fax (337) 359-8747
Toll Free (866)-494-8900,
E-mail: teamfsrc@bellsouth.net

Assumption, St. John, St. Charles and St. James Parishes
2840 Airline Highway, Suite D
LaPlace, LA 70068
(985) 479-2430 fax (985) 479-2432
Toll Free (866) 234-0593
E-mail: marygibson@sw.rr.com

Terrebonne, Lafourche and St. Mary Pairshes
760 West Tunnel Blvd., Suite B
Houma, LA 70360
(985) 872-1830 Fax (985) 872-1841
E-mail: slassere@bellsouth.net

Lafayette, Iberia, St. Martin and Vermillion Parishes
P.O. Box 12213
New Iberia, LA 70562
(337) 359-8748 Fax (337) 359-8747
Toll Free (866)-494-8900
E-mail: teamfsrc@bellsouth.net

St. Landry, Evangeline and Acadia Parishes
P.O. Box 12213
New Iberia, LA 70562
(337) 359-8748 fax (337) 359-8747
Toll Free (866)-494-8900,
E-mail: teamfsrc@bellsouth.net

Join LaDisability Talk
http://groups.yahoo.com/group/LaDisabilityTalk/
Louisiana advocates are sharing information, resources and support through this internet discussion group. To join send an e-mail to
LaDisabilityTalk-subscribe@yahoogroups.com
For more information contact the group moderator:
Cindy Arceneaux, carceneaux@projectprompt.com,
504 888 9111, Toll Free 1 800 766 7736
No home e-mail? Remember that local libraries can give you free access to the internet. There are no cost e-mail providers.

back to top

Moving from IFSP to IEP
By Judy Otto

Just when I thought I had it down pat, knowing when to bring my son to therapy, when his teacher came to the house, when his home-based therapist came to the house, when he could nap, and when it was safe for me to use the bathroom, everything changed. I had just learned the meaning of the IFSP or Individualized Family Service Plan and it was great… everyone asking what I wanted in regard to my son. Not that I got everything I wanted, but I was being asked! Then, near my son's third birthday, I was told that he now needed an IEP or Individualized Education Plan. I was told there was little difference between the two except that one was for infants and toddlers under the age of 3, and the other was for those over the age of 3.

After a 3 hour IEP meeting, it was perfectly clear that the two, although similar, were quite different. For one thing, the focus now shifted to my son. I was still an integral part of the team, but instead of the family focus I enjoyed with the IFSP, the center now became my son. For another, the focus shifted to school issues only. Therapy services were considered “as they relate to performance in the school setting.” I found myself having to advocate more on my son's behalf now that we were in the school system.

Listed below are some key differences between IFSP and IEP.

Function IFSP IEP Serves Infants, toddlers, families Preschoolers and older children with disabilities who function at developing language levels

Focuses on Family Child, although parents are still central to the team

Evaluates Level of development Present level of development or across all developmental educational performance
domains

States Family and child's strengths Student's needs, goals and objectives
and needs, resources and to be addressed
priority concerns

Services Necessary to meet needs Specific to the education and related of child and family school services

back to top


Facing the Disability Head On
By Mary Jacob

I can remember the day like it was yesterday. I was sitting in a national conference for parent centers and listening to two young men eloquently tell their stories about how they felt about their disabilities and how they dealt with it and the educators. I can remember thinking as I sat there listening to Josh speak, that he had so much in common with my daughter Megan. They were both the same age, both had dyslexia and ADD, both were outgoing teenagers that seemed to push the limits in regard to what "others" think they can accomplish. I also saw a young man that had recently come to grips with his disability. That's when the tears started and I realized the one big difference between Josh and Megan. I knew in order for Megan to find true contentment with her life, she had to accept her disability and focus on her strengths rather than the weaknesses.

I can remember coming back from Washington, DC that January 2001 and facing my daughter a few days later with her report card from the first semester of high school and hearing the hysteria in her voice because she had failed almost everything. I knew then, it was time to face the disability head on.

I sat Megan down and reassured her that she wasn't stupid, that she had a lot of great gifts that report cards don't measure, but most importantly, she was who God created and He created her for that reason. We can't possibly understand why
at this point, but she was sent from heaven on this earth with a mission. Over the next few weeks we spoke about the disability and tried to determine if tutoring was needed or if the work was just entirely over her head. She did a lot of soul searching and decided that the work seemed almost foreign to her. Unless she had a teacher that never gave written exams and taught exclusively hands on, Megan wasn't going to succeed in that class.

During her IEP meeting she stated that she was not an auditory learner. She can't deal with teachers that just stand in front of a class and lecture. She needs hands on activities to do. She, in fact, did not only understood her disability, but she understood her own learning style as well.

The following fall, I had the opportunity to invite the two young men I heard in Washington, D.C. to speak to a local conference and Megan got to meet them. It was a great opportunity for her to talk to other teenagers that had similar disabilities.

The next two years of high school would prove to be extremely successful for Megan. The school allowed her to be flexible in her scheduling. She took classes she knew she would have success in. She was allowed to hand pick teachers that she knew would teach to her learning style. She became more involved in extra curricular activities like swim team and year book staff. She also became a certified Red Cross Lifeguard and Swim Instructor. Megan realized her true gift and love were swimming and children. She is now able to work in a field that gives her the opportunity to do both. Megan hopes to one day go to college to become an early childhood educator. Last week I took Megan to look at senior rings. It's hard to believe this journey is almost over!

back to top

Who is Carnegie and why do students need him to graduate with a diploma

Andrew Carnegie (1835-1919) was an American industrialist and philanthropist. He was born in Scotland and later moved to the United States. Although he did not have a formal education, he developed a life-long interest in books and education. Because he had such great respect for education and believed that wealth should be used for the public good, he donated most of his fortune to various educational, cultural, and peace institutions throughout his lifetime, including Carnegie Hall and numerous libraries.

In 1907, the Carnegie Foundation for the Advancement of Teaching developed the Carnegie unit as a means of measuring the amount of time a student had studied a subject. Initially, the requirement to enter college was 14 Carnegie units and to persuade colleges to use the new system, the Foundation would not allow participation in the pension program then being set up for college faculty unless the college required the 14 units as part of its admission standards.

Currently, the Carnegie unit is used by most states in determining readiness for high school graduation. According to the Carnegie Foundation, the Carnegie unit is about 120 hours of instruction in one subject in a class that meets 4 to 5 times per week, for 40 to 60 minutes each session, for 36 to 40 weeks. In the United States, the number of Carnegie units needed to graduate varies considerably from as few as 13 to as many as 24. Louisiana has one of the highest Carnegie unit requirements with each student needing 23 units to graduate (see table below).

References

Carnegie, Andrew, Microsoft® Encarta® Online Encyclopedia 2003
http://encarta.msn.com© 1997-2003 Microsoft Corporation. All Rights Reserved.

Carnegie Foundation – Frequently Asked Questions – http://www.carnegiefoundation.org/aboutus/faq.htm

Carnegie Unit – http://www.sizes.com/units/carnegie_unit.htm

Carnegie Units – http://lattc.edu/dept/handbook/carnegie_units.htm

Daily Celebrations – Andrew Carnegie – http://www.dailycelebrations.com/112599.htm

Louisiana Minimum Requirements for High School Graduation

Subject Units

English 4 units
Mathematics 3 units
Science 3 units
Social Studies 3 units
Health Education 1/2 unit
Physical Education 1-1/2 units
Electives 8 units

Total Units 23


For further information contact:
Division of Student Standards and Assessments
Louisiana Department of Education
626 North 4th Street
Baton Rouge, LA 70804-9064
225-342-1152
jfalls@doe.state.la.us


Pre-GED/Skills Option III: Alternative to Carnegie Unit

The State Board of Elementary and Secondary Education (BESE) at its December 2000 meeting voted to approve the concept of a Pre-GED academic program paired with skills instruction for students who are at risk of dropping out of high school. These students leave before graduation either because they have not been successful in earning enough Carnegie credits to graduate from school in the expected four years time period, or because they have been unsuccessful in passing the State's high stakes examination.

The purpose of the Pre-GED/Skills Option Program is to give these students an avenue for achieving academically and for ultimately earning recognized credentials that will make it possible for them to exit high school, and to enter postsecondary education and/or the work force. The skills component of the program helps prepare these students to work competently in specific occupations and to function as successful members of their community.

Pre-GED/Skills Option Program Requirements

1. Students shall be 16 years of age or older and shall meet one or more of the following criteria:

- Shall have failed LEAP 21 English language arts and/or math 8th grade test for one or two years;
- Shall have failed English language arts, math, science and/or social studies portion of the GEE;
- Shall have participated in out-of-level testing or alternate assessment;
- Shall have earned not more than five Carnegie units by age 17, not more than ten Carnegie units by age 18, or not more than fifteen Carnegie units by age 19.

2. Enrollment is voluntary and requires parent/guardian consent.
3. Counseling is a required component of the program.
4. The program shall have both a Pre-GED/academic component and a skills/job training component. Traditional Carnegie credit course work may be offered but is not required. Districts are encouraged to work with local postsecondary institutions, youth-serving entities, and/or businesses in developing the skills component.
5. The State BESE will require the Pre-GED/Skills Option Program to be on a separate site. Exceptions will be considered based on space availability, transportation or a unique issue.
6. Students who complete only the Skills section will be given a Certificate of Skills completion.
7. Students will count in the October 1st MFP count.
8. Students will be included in School Accountability. While enrolled, they will be required to take the 9th grade Iowa Test or to participate in out-of-level testing. All programs will be considered Option 1 for alternative education purposes, and student data will be sent back to the high schools to be included in the attendance an dropout rates and in the Iowa Test scores. (See Standard 2.006.17 of Bulletin 741.)

Editor's Note: This program is for all students, including those who have disabilities. The above information is from the Louisiana Department of Education website in a file named: http://www.doe.state.la.us/DOE/adulted/Youth/Preged.pdf

back to top

Louisiana Statewide Transition Council
By Brenda Singelmann

In the past several years there has been a grant in Louisiana called Louisiana Statewide Transition Project (LSTP). This grant focused on transition issues in our state from a systems change perspective. Efforts included such activities as developing a booklet on transition; a template for different school systems to use as a beginning for developing a local resource guide; fact sheets on topics around transition issues; and assistance with individual student's transitions needs as well as forming core teams to address policy and specific transition changes. One of the needs identified was a system that would enable teachers, students, families and administrators to go to for guidance on specific and policy issues regarding transition.

On December 12, 2002 a Louisiana Statewide Transition Council was signed into being. A letter of agreement was signed by Mr. James Wallace, Director of Louisiana Rehabilitation Services; Mrs. Virginia Beridon, Director of State Department of Education – Division of Special Populations; Mrs. Rose Gilbert, Director of Families Helping Families of

Greater New Orleans; Mr. Warren Taylor-Price, Assistant Secretary, Office of Mental Health; Mr. Raymond Jetson, Assistant Secretary, Office for Citizens with Developmental Disabilities; and Mrs. Barbara Dodge, Director of Bureau of Community Supports and Services. The letter of agreement details ways the agencies will work together to make transition outcomes more successful. On the executive level, policies will be reviewed in order to address changes that will afford young adults the opportunity to leave high school prepared to enter the adult world of college, work, banking and other areas as independently as possible. The second level of collaboration will revolve around joint trainings, a future statewide transition conference and keeping the LSTP products updated.

This Council has been the result of the dreams and hard work of many individuals from students, parents, teachers, administrators – local, state and federal, project staff and many others. We would like to express our sincere thanks for all their efforts.

back to top

Interagency Transition Teaming: Ensuring Collaboration for the Development and Implementation of Transition Services
-Michele B. Crosby, Ph.D., St. Bernard Parish School Board,
Special Education Administrative Assistant

Transition planning and programming for students with disabilities involves many supporting players. Educators play a leading role in preparing students for future outcomes, but they cannot do this task in isolation. Successful transition from high school to adult life requires a collaborative effort to accomplish this important task.
Family members and students are critical members of the collaborative teaming process. Students are pivotal team members, as they must communicate their goals, interests, and preferences. Family members serve as a constant and continuing support throughout the student's lives and provide information about each student's future vision.

Other critical members include school personnel and adult service agency representatives. School personnel can provide training and information regarding post-secondary education opportunities. Adult service agency personnel need to be linked to students and families early in the process to ensure continuity of services.
An effective model for providing comprehensive, coordinated transition services is the formation of an interagency transition team at the school district level. The efforts of community interagency transition teams can dramatically enhance secondary school preparation and post-secondary options for students with disabilities. These teams identify community needs, develop common goals and actions plans, problem-solve how to make interagency collaboration happen, create training and employment opportunities for students, and identify community resources to achieve plans. St. Bernard Parish School Board has an established Interagency Transition Core Team that has been operational for 13 years with committed, active membership representative of all the key players. A discussion of team membership, team activities, and outcomes follows.

Team Membership
The membership of the interagency team should represent the residents of the community being served. Core team membership should include: (a) individuals with disabilities and their families; (b) school personnel; and (c) adult agency personnel. Representatives from these groups should involve those people directly responsible for services in the community. For example, the team might include: (a) a secondary student with a disability and family member(s); (b) the local education agency's education or transition coordinator; and (c) the local Louisiana Rehab Services (LRS), Office of citizens with Developmental Disabilities (OCDD), and Office of Mental Health (OMH) representative. The interagency core team assumes responsibility for collaborative decision-making around transition issues for the local education agency.

Associate membership can be extended to community representatives that may contribute to the provision of transition related services and supports. This membership may include representative(s) from: (a) supported employment providers; (b) social security; (c) public/private transportation; (d) advocacy services; (e) post-secondary education; (f) ADA local representative; (g) independent living resources; and, (h) other appropriate agencies and individuals. The associate members assist the Core Team is identifying transition issues in the community and the resources required to address these issues. Typically, associate members meet with the Core Team at the beginning of each school year to assist in developing annual goals/outcomes and again at the end of the school year to evaluate progress in achieving the goals/outcomes. Associate members may be asked to participate as work team members addressing the annual goals/outcomes.

Goals and Functions The primary goal of the interagency transition team is to enhance, develop, and support transition services for students with disabilities. Essential to this process is local community involvement, including families and students, sharing and coordinating community resources, and collaborating between service providers. Some of the major functions of the interagency core team include: team development; community needs assessment; education, training, and employment opportunities; technical assistance; interagency collaboration; and, evaluating effectiveness.

Team development or formation is the first task. This involves identifying the core team members, selecting a chairperson(s), establishing relationships among members, and agreeing on a mission statement or common goal. In order to conduct a transition needs assessment the team may choose to review outcome data including the results of consumer satisfaction surveys. The results of this review will assist in developing long and short term goals. Once goals are identified, an action plan can be developed. This process involves identifying objectives or outcomes, tasks to be accomplished, time lines, required resources and responsible persons. The structure of an annual calendar and monthly meeting dates to monitor, coordinate, and modify activities is critical. The identification and creation of post school employment opportunities in the community becomes an obvious task of the team. Evaluating team effectiveness both formally and informally is essential. Annual goals need to be examined at the conclusion of each year to determine if expectations have been met and to assist in the development of the next year's goals.

St. Bernard Parish Interagency Core Team

The St. Bernard Parish Interagency Core Team was developed and functions under the guidelines described in this article. The core team membership includes a family member, a special education administrator, vocational training specialists, LRS counselor, OCDD representative, OMH representative, Families Helping Families representative, and LSUHSC representative. The associate membership is comprised of approximately 20 individuals representing the following services: advocacy, transportation, supported employment, independent living, case management, and social security.

The mission of the Interagency Core Team is incorporated into a written agreement signed by representatives of each of the agencies. The policies and procedures are delineated in the Interagency Core Team bylaws. Procedures specify that the Chair is shared by the LEA representative and a representative from each of the agencies (rotates annually). The Interagency Core Team meets monthly with a specific agenda. Typically the agenda includes a student focus component to discuss the transition progress for every student in the interagency transition process. This discussion assists the Interagency Core Team in keeping sight of our mission: collaboration to ensure effective transition services to students and families.

The Interagency Core Team meets with the associate membership in August of each year to develop annual goals/outcomes. The goals/outcomes for this year include: expansion of recreation/leisure activities in inclusive community settings; expansion of transportation services; development of a Resource Guide for families, students, and teachers; and, review of outcome data. The Interagency Core Team meets with the associate membership in June to evaluate the progress toward achieving the annual goals/outcomes.

One of the most successful and valuable activities sponsored by the Core Team in partnership with Families Helping Families is a fall and spring forum. Topics have included employment opportunities, legal issues, independent living, and social security. Family members and students are invited to attend and supper is provided. The forums have been well attended and have received positive responses from families and students.

These systematic interagency collaborative efforts have resulted in qualitatively improved transition services for students with disabilities in St. Bernard Parish.

References:
Everson, J. M., & Guillory, J.D. (2002). Interagency teaming: strategies for facilitating teams from forming through performing. Louisiana State University Health Sciences Center.
Patton, J. R., & Blalock, G. (1996). Transition and students with learning disabilities. Austin, TX: pro-ed.

Do you know about the Interagency Transition Core Team in your area? Does it have representation from families of and people with disabilities? Would you like to learn what activities, if any, an Interagency Transition Core Team may be planning in your area? Contact your local Families Helping Families Family Resource Center to learn more about transition. STAR Project and/or Project PROMPT staff can help you identify the local school system staff in charge of transition and describe the Core Teams in your area.

back to top

Turned down for SSI benefits for your child based on your income? Your child may become eligible at age 18! 

"Deeming” is the process of determining how much of your income and resources will be used.

When does deeming apply?
If the parent(s) has income or resources that must be considered;
AND
If a child:
is under age 18; and
lives at home with his/her natural, or adoptive parent(s); or
lives away at school, but comes home on some weekends, holidays, or school vacations and is subject to parental control.
When does deeming not apply?
Deeming stops the month after a child turns age 18. Therefore, a child, who could not receive SSI because of deeming, may be able to get SSI when he/she turns age 18.
Deeming does not apply in some other situations.

THIS INFORMATION IS GENERAL. FOR MORE INFORMATION, CALL 1-800-772-1213 (TTY 1-800-325-0778), VISIT OUR WEBSITE (www.socialsecurity.gov) ON THE INTERNET, OR CONTACT YOUR LOCAL SOCIAL SECURITY OFFICE.

back to top

Transition Planning: Taking the First Steps

To improve transition results for young people with disabilities, individual transition team members and community transition team members must work creatively. Many services exist in every community. If transition team members cultivate relationships with these resources and combine successful teamwork methods with the services available in their community, they will be able to create dynamic individual plans. Here are some starting steps:

Students:

• Write down your long-term goals and what you think you need to do to reach these.
• Read your IEP and transition plan and decide if the plan is being implemented.
• Tell your teachers you want to lead your own IEP meeting and ask them to help you learn what to do.
• Learn about your civil rights under the law, such as the Americans with Disabilities Act.
• Learn about your disability, how to explain to people your strengths, and how to ask for reasonable accommodations.
• Practice job interviews and/or asking for accommodations.
• Talk with your doctor and parents about your health care needs so you will be ready to take responsibility for them.
• Ask your teacher how to get involved with your community's transition team.

Family Members:

• Observe your son or daughter's independent living skills, work behaviors, social involvement, dreams, and hopes.
• Call your child's teachers and ask that transition services, including financial planning, be addressed at your next meeting.
• Help your child learn about his or her disability and how to ask for the supports he or she needs.
• Give your child responsibility for chores at home.
• Role play different situations with your child (e.g., interviews).
• Discuss your child's medical needs with him or her and facilitate discussions with your doctor.
• Introduce your child to adult role models with disabilities.
• Look in your phone book and Yellow Pages and identify three new possible resources to help your son or daughter's transition to adult activities.
This information is copyright free.
Readers are encouraged to copy and share it, but please credit the National Information Center for Children and Youth with Disabilities (NICHCY).
P.O. Box 1492
Washington, DC 20013
(800) 695-0285 • v/tty
(202) 884-8441 • fax
nichcy@aed.org
www.nichcy.org

back to top


Transition Planning: Future Visions and Self Determination
by Rose Gilbert

Recently, when I was offering what became obvious was unwarranted assistance, Nick asked me “How old am I?” Having been at his birth, that was easy to answer. So I said, “You're 22 Nick.” Nick then emphatically informed me, “Right, I 22, I do it myself!”

With this proclamation I realized it was time for me to pat myself on the back. The years of attending workshops, reading, planning, meeting, and negotiating had finally paid off. Nick has two part time jobs and a goal of owning his own home. He is well on his way to living a full life, independent of constant guidance from his parents and very much able to express his wants, needs, and desires.

Did this happen overnight? Well, it seems like just a month ago that I attended a Developmental Disabilities Council conference on Inclusive Education. Wasn't it two weeks ago I was begging for more time for Nick in regular classroom settings? And surely it was just a few days ago that he graduated from high school, right? NO! All this took years of planning. Planning for Nick's transition from school to adult life. It doesn't happen over night!

I didn't understand that I was already in that process when Nick was in elementary school. Each school year I asked for additional time in the regular class setting with his non-disabled peers. Or I asked for additional opportunities for him to be exposed to kids without disabilities at lunch, recess or special activities.

Then in middle school we took a couple of steps backwards and had to prove that he could handle the new campus. We were fortunate that the middle and high school shared some campus buildings. If this hadn't been so, we would have had to take steps backwards in high school as well.

The greatest success in high school came when Nick started attending his own IEP meetings. He was allowed to say what he wanted to get out of his education program. Nick insisted that he be allowed to attend band class (I'd been asking for 3 years and couldn't get it for him). He achieved his goal because he advocated for himself. He lettered in band for three years and marched in Mardi Gras parades playing the cymbals.

What were my guiding thoughts? First, I always considered, “If Nick didn't have a disability what would he be doing?” We worked toward helping him to achieve whatever that was - with whatever accommodations he needed - to be successful at the level he could participate. The sky was the limit! Nick and I refused to be limited by how and what the systems offered.

Guiding thought #2 was that Nick would not live his adult life in a segregated world. Therefore he could not be educated in a segregated setting. Nick attended each of the public schools that he would have, had he not had a disability. If you investigated his success as co-manager of the football team and in ROTC you could always find that he had the support of the non-disabled students around him. They moved from school year to school year with him. Their support was a natural consequence of their friendships, understanding and exposure to his disability.

My third and last guiding thought was that I am not ultimately in control. Oh, I organized, advocated, planned and worried. But I faced the hard reality that I could never do enough to keep Nick safe. I can only do my best to make sure everything and everyone is in place to support him. Inevitably something will go wrong. So I must trust in God to take care of Nick and to guide him each day.

Some people have dismissed Nick's accomplishments saying that “He's not that disabled.” To be 22 years old and not be able to read but on a 1st grade level; to only be able to write in large printed letters; to have to take four medications to control impulses, ADHD, depression and anxiety; to act out your conversation so that people can understand what you are trying to say; to never receive invitations to “hang out” with your friends...all these situations can be very disabling.

Recently I asked Nick, “Do you know you have a disability?” He said, “Yeah, in my brain, not my body.” With tears in my eyes I asked, “How do you feel about that?” He answered, “It's ok, it's me.”

My goal is to encourage families to dream and plan for the future. By federal law transition planning may start by age 14. I believe all of us start “transitioning” the day we are born! As family members we should begin looking to the future immediately. By our children's 8th or 9th birthday we should have some idea of what their future may look like. We should be sharing that picture with all the professionals who support and teach our children.

Most of all we must remember that as our children mature (even if that maturation is delayed) they should be allowed opportunities to make decisions about their personal desires and preferences. Eventually, sometimes with support, they will be in the “driver's seat”. (Figuratively speaking of course, since that is one goal of Nick's that I'm not sure the world is ready for!)

In January, 2003 I attended the Self-Determination Immersion Conference in Baton Rouge. I learned the Principles of Self-Determination. They are:

Freedom…to plan a real life,

Authority…over your resources,

Support…for building a life in your community, and

Responsibility…to give back to your community.


These principles are an affirmation of my “guiding thoughts”. Unbeknownst to me they were woven amongst the support given and decisions made throughout Nick's life. They will continue to be the foundation for his future.

Contemplate these principles. Dream of a “self-determined” future for your son or daughter and start planning today!

back to top

"DOT Creates New Disability Hot Line"

The Department of Transportation's aviation consumer disability toll-free hotline became operational at 7 a.m. local time in Washington, D.C., on August 5, 2002. The toll-free number for our aviation consumer disability hotline is 1-866-266-1368 (voice) and 1-866-754-4368 (TTY). People with disabilities are encouraged to call the hotline to get information and assistance about any air traveler disability-related service problems.

back to top


Youth Leadership Forum for Students With Disabilities Questions and Answers

What is the Youth Leadership Forum ?

The Youth Leadership Forum for Students with Disabilities (YLF) is a unique career leadership training program for high school juniors and seniors with disabilities. By serving as delegates from their communities at a four-day event in their state capital, young people with disabilities cultivate leadership, citizenship, and social skills.

How are delegates selected for the forum?

The delegates are chosen through a statewide competition that seeks students with disabilities who have leadership potential. Each applicant submits a standard form, an essay, and letters of recommendation. The group that is selected is representative of the state in terms of geography, gender, economic status, ethnicity, and types of disabilities.

Is there a cost for Students to attend?

No. The commitment of the YLF is to enable youth with disabilities to grow personally, socially, and academically, and to fulfill their potential in their work and their lives. No student should be denied this opportunity because of economic hardship. All costs, including transportation, are paid for through fundraising, sponsored scholarships, and corporate donations.

Whom do I contact for more information?
Twyla McNeely or Brenda Singelmann
Louisiana Youth Leadership Forum
Families Helping Families of Greater New Orleans
Family Resource Center
4323 Division Street, Ste. 110
Metairie, Louisiana 70002-3179


Driving With A Disability: Is That Possible??
Judith K. Otto, L.O.T.R.

Driving is an activity of daily living that can be the key to independence for people both with a disability and without. Learning to drive a car can be a challenge when a disability is present. According to current Louisiana Department of Motor Vehicles policy, any driver or potential driver suspected of having a disability must have a Medical Examination form signed by a physician stating that the person is able to operate a car. Usually, a physician will request a driver's evaluation to help in the decision making process.

Driver Assessment and Rehabilitation Programs offer evaluation services by a specially trained professional to help identify functional strengths and weaknesses that can affect driving ability.

The professional then makes recommendations regarding the performance, future needs, adaptive equipment needs and suggested therapy or activities that may be useful in helping the person maximize their ability to drive.

A Driver Assessment and Rehabilitation Program consists of several components including clinical evaluation, in-car evaluation, and driver's training and instruction in some instances. The clinical evaluation generally consists of vision screening, visual perceptual screening, and assessment of cognitive skills, judgment, mobility, and lower extremity reaction time. If the person performs satisfactorily in these areas, behind the wheel training can then be recommended.

For those individuals successfully completing the driver's training, additional in-car evaluation is recommended to ensure driving safety. The in-car evaluation consists of an extensive assessment of actual driving performance. Driving routes typically begin in no-traffic areas and, if performance is satisfactory, proceeds to low, moderate, and heavy traffic areas. Performance skills, traffic safety skills, and anticipation of hazards are assessed in all traffic areas.

Persons who are appropriate for driver's assessment and Rehabilitation Programs include, but are not limited to, those who have mental disabilities (Depression, etc.), physical disabilities (Spina Bifida, Stroke, Amputation, Neuromuscular Disorders and Spinal Cord Injury, etc.) and cognitive disabilities (Learning Disability, Head Injury, etc.). To participate in the evaluation, the person must be seizure free for at least six months and be free of other medical conditions that would make driving unsafe (i.e. narcolepsy). For further information contact:

Assoc of Driver Educators for the Disabled
711 S. Vienna Street Ruston, LA 71270
1-318-257-5055
1-800-290-2344
1-318-255-4175 (fax) http://www.aded.net

Judith K. Otto, Driver Rehabilitation Evaluator
Touro Infirmary
1401 Foucher Street, New Orleans, LA
1-504-897-8860
1-504-897-8709 (fax)
ottoj@touro.com

back to top

Age of Majority: Preparing Your Child for Making Good Choices

Parents want their children to have the skills they need to succeed as adults. While this is important for every young person, youth with disabilities often face extra challenges. That's why they need to be actively involved in setting their high school goals and planning for their transition to adulthood well before they reach the age of majority. (In most states, the age of majority is 18, but there are exceptions. It is important to know your state's laws.)

The Individuals with Disabilities Education Act (IDEA) gives states the authority to elect to transfer educational decision-making rights to students at the age of majority. In a state that transfers rights at the age of majority, beginning at least one year before a student reaches the age of majority under State law, the student's individualized education program (IEP) must include a statement that the student has been informed of his or her rights, if any, under Part B of IDEA, that will transfer to the student upon reaching the age of majority. The public agency shall provide any notice required by Part B to both the student and the parents. (This regulation does not apply to students who have been determined to be incompetent under State law.)

In a state that has elected to transfer educational decision-making rights at the age of majority, students become responsible for their educational program. Students, not their parents, are the primary participant in developing their IEP and they become responsible for making other decisions, such as consenting to any changes in placement or requesting mediation or due process hearings to resolve disputes.

Reaching the age of majority can be an exciting time for most students. Transferring rights to young adults who are unable to make informed decisions or take responsibility for their choices, however, carries many risks. Will students decide to drop out of high school or accept a quick diploma and become ineligible for much-needed transition services? Many of the decisions young adults make affect their quality of life after high school.

Some states have a legal process to determine if a student who receives special education and has reached the age of majority continues to need help in planning her or his IEP. Students may not necessarily have the ability to provide informed consent to their educational program even though they have not been determined to be incompetent. Such states have a mechanism to determine that a student with a disability, who has reached the age of majority under State law and has not been determined incompetent, still does not have the ability to provide informed consent with respect to his or her educational program. In such cases, the State shall establish procedures for appointing the parent, or, if the parent is not available, another appointed individual, to represent the educational interests of the student throughout the student's eligibility under Part B of IDEA.

Helping Your Child Prepare for the Age of Majority

As parents, we can begin to help our children prepare for adulthood by looking at the role we play in their lives. Do we try too hard to sway our children's decisions? Do we tend to speak for our children instead of letting them speak for themselves? Can we separate our own desires from our children's wishes? It can be hard to let go of our parental role when we love our children and worry about their future. But we may need to step back and look at our own actions. Our role is to help our children to become comfortable making their own decisions and capable of making good choices. Children develop decision-making skills over time. Young children can practice these skills within the family. Older children can take increasing responsibility for the decisions that affect their lives.

Age of majority is the legal age established under state law at which an individual is no longer a minor and, as a young adult, has the right and responsibility to make certain legal choices that adults make.

Rights That Transfer in Most States

In states that transfer educational rights at the age of majority, all of the educational rights provided to the parents transfer to the student when he or she reaches the age of majority. These educational rights may include the right to receive notice of and attend individual education program (IEP) meetings, consent to reevaluation, consent to change in placement, request for mediation or a due process hearing to resolve a dispute about evaluation, identification, eligibility, IEP, placement, or other aspects of a free appropriate public education (FAPE).

Teaching Young Children How to Make Decisions

Include your child in purchasing decisions. Does your child help select his or her own clothing and help with grocery shopping and meal planning? Discuss important decisions such as vacation plans and major purchases as a family. Routinely state your thoughts out loud so your children have a model for good decision making: We are not ready to decide on that yet, let's talk about it tomorrow after dinner; or Let's gather more information before we buy this. Practice with your child what he or she should do if lost.

Teaching Older Children How to Make Decisions

Encourage your child to participate in planning his or her IEP and even leading the IEP meeting. Role-play IEP meetings with your child ahead of time to help him or her clarify what he or she wants from the meeting. Practice how to step out of the meeting to discuss a decision in private. Ask your child if he or she wants to invite anyone to the meeting for support.

Help your child develop good working relationships with school personnel and other IEP team members so there is little disruption when he or she reaches the age of majority.

Do not allow educators to pressure your child into making decisions he or she is not capable of handling.

Avoid being overprotective. Do not interfere with your child's desires when it is not truly necessary. Stay involved even after you are no longer the primary participant in the development of your child's IEP. IDEA does not address parents‘ attendance at IEP meetings once a student has reached the age of majority. The school or student could, however, invite a parent to attend the meeting as an individual who is knowledgeable about the student's educational needs and abilities.

Guardianship

If a state elects to transfer rights at the age of majority, IDEA requires at least one year of notice to parents and students before a student reaches the age of majority. This notice alerts families to consider whether or not their child is capable of representing him or herself.

At the age of majority, students are granted certain legal rights, such as the right to vote, marry, obtain a credit card, consent to medical treatments, make living arrangements, and sign contracts. Each of the 50 states determines what rights transfer to individuals at the age of majority within that state. Some students may not be able to recognize when a decision needs to be made, consider possible options, or recognize the consequences of their decisions without additional support. For these students, guardianship, conservatorship, or another form of representation by an advocate may be appropriate.

When the student reaches the age of majority under State law (except for a child with a disability who has been determined to be incompetent under State law):

(A) The public agency shall provide any notice required by IDEA to both the individual and the parents;
(B) All other rights accorded to parents under IDEA transfer to the child;
(C) The agency shall notify the individual and the parents of the transfer of rights; and
(D) All rights accorded to parents under IDEA transfer to children who are incarcerated in an adult or juvenile Federal, State, or local correctional institution [20 U.S.C. 1415(m)].

Under guardianship, a person is considered to be legally incompetent. The individual loses the authority to make all the decisions granted to adults. A person called the guardian is assigned by the court to make these decisions. The guardian is usually a parent. The person under guardianship is legally referred to as the ward.

Many states also offer limited guardianship, sometimes called conservatorship. People who are granted conservatorship for another individual are assigned limited decision-making responsibility based on the individual's needs. These responsibilities are carefully outlined in a court order. Conservatorship is designed to allow a person to retain as many of his or her rights as possible. A person under conservatorship is not considered to be legally incompetent. He or she retains as many rights as deemed appropriate by the court. Different people have different limitations under conservatorship, depending on their individual vulnerabilities. The person the court appoints to make decisions on behalf of the individual is called the conservator. The person who has a conservator assigned is considered the conservatee.

Obtaining guardianship or conservatorship for a person requires a petition to be filed with a court alleging that the person needs such an arrangement, a court hearing on the case, and annual reports filed with the court regarding the status of the arrangement. The petition for guardianship or conservatorship often involves numerous complicated forms, although it is not required that an attorney be involved in the process. Petitioners can obtain necessary forms from the probate court.

Guardianship, and to a lesser extent conservatorship, severely limits an individual's right to make independent decisions and should only be considered when there is no less restrictive alternative. If your child is not able to make educational decisions but does not need guardianship or conservatorship, you may want to explore procedures within your state that may allow an advocate to represent the educational interests of your child.

Graduation: Another Transition Consideration

If a student with a disability graduates with a regular diploma, the student loses eligibility for a free appropriate public education (FAPE). However, if a student graduates with any other type of diploma or certificate, the student may retain eligibility for education services.

Timely Notice

Schools must notify parents before proposing to graduate a student with disabilities because it is considered a change in placement. This notice must be given within a reasonable time before graduation to ensure that parents and students have the opportunity to plan for, or challenge, the pending graduation.

In some States, there may be additional laws and procedures that allow for a lesser determination of competency for specific purposes, such as competency for providing informed consent with respect to the individual's educational program. Under the State procedures established in such cases for appointing the parent, if the parent is not available, a guardian or surrogate could be an appropriate individual to represent the educational interests of the student [34 CFR Appendix P. 12617; Federal Register Vol. 64, March 12, 1999].

Adapted from “The Parent Brief” produced by the National Center on Secondary Education and Transition (NCSET) and PACER Center.

Editors Note: The age of majority in Louisiana is 18. For more information regarding legal status in Louisiana, you may also contact The Advocacy Center at 1-800-960-7705

back to top

back to articles