2011 CEC Yes I Can Award Winner

Posted on March 03, 2011

Children and families experience many transitions, pharm medical large and small, discount over the years. Three predictable transitions occur:

1. When children reach school age.
2. When they approach adolescence.
3. When children move from adolescence to adulthood.

Other transitions children make include moving into new programs, working with new agencies and care providers, and making new friends. Transition involves changes, adding new expectations, responsibilities, or resources, and letting go of others.

As a parent of a child with deafblindness or other severe disabilities you may be caught up in day-to-day survival. You may ask, “How can I think about tomorrow when I’m just trying to make it through today?” But when those moments come, when you can catch your breath, it may be helpful to be aware of those transitions and allow yourself to think about the future.

The Transition Timeline for Children and Adolescents with Deafblindness and/or Severe Disabilities may help you think about the future. We hope this timeline will give you ideas to help your child achieve independence as you face the transitions ahead of you.

Adapted by Utah’s Deafblind Project, Transition Task Force.

Sources

  • Intermountain Collaborative Resource Center. “Transition Timeline for Children and Adolescents with Special Health Care Needs.”
  • Bloomberg, R. & Petroff, J. (2003, April). Quality Indicators for Transition Service – A Tool for Self Assessment and Program Development. Presented at NTAC Topical Workshop, Transitioning to a New L(Attitude), San Antonio, Texas.
  • Petroff, J. (2003, April). Comprehensive Transition Protocol. Presented at NTAC Topical Workshop, Transitioning to a New L(Attitude), San Antonio,Texas.

For more information and additional copies please contact:
Deafblind Division, 742 Harrison Boulevard, Ogden, UT 84404, 801-629-4732,
Toll Free 1-800-990-9328, TDD 801-629-4701.

Developed by Utah’s Deafblind Project and funded through the U.S. Department
of Education, OSERS, Special Education Programs, Grant Award No.
H326C030012. This Timeline can be reproduced for educational purposes only.
The timeline can be found at http://www.usdb.org/db/db/trainingandtechnicalassistance.html

Additional Supports Available/Contact Information

Access Utah 801-325-5823 www.accessut.state.ut.us

Allies with Families 800-829-8200/801-584-8284 http://health.utah.gov/cshcn

American Association of the Deaf-Blind (AADB) www.aadb.or

Assistive Technology Lab, USU 435-797-0699

Centers for Independent Living 801-538-7530/ 800-473-7530 www.usor.utah.gov/il.htm

Children with Special Health Care Needs (CSHCN) 801-292-2515 http://heath.utah.gov/cshen

Children’s Health Insurance Policy (CHIP) 888-222-2542 http://health.utah.gov/chip

DBLINK: National Information Clearinghouse on Children Who Are Deaf-Blind

800-438-9376 www.tr.wou.edu/dblink

Disability Determination Services (SSI Eligibility) 801-321-6500

Disability Law Center 800.662-9080 www.disabilitylawcenter.org

Division of Services for People with Disabilties (DSPD)

801-264-7620 www.hsdspd.state.ut.us

Division of Services for the Blind and Visually Impaired

801-323-4343 www.usor.utah.gov/dsbvi.htm

Division of Substance Abuse and Mental Health Community Centers

801-538-3939 www.hsmh.utah.gov

Forward Motion 801-536-3523

Guardianship Associates of Utah 801-533-0203/888-498-0203

Hearing, Speech and Vision Services, Dept. of Health

801-584-8215 www.health.utah.gov/cshcn/hsvs/

Helen Keller National Center for Deaf-Blind Youth and Adults (HKNC)

516-944-7302 www.helenkeller.org/national

Hilton/Perkins Program – Perkins School for the Blind http://www.perkins.pvt.k12.ma.us/

Interagency Coordinating Council www.babywatch.org/ICC/Introduction_page_1.htm

Medicaid 800-662-9651 http://health.utah.gov/medicaid

National Family Association for Deaf-Blind (NFADB)

800-255-0411 http://nfadb.org/

Office of Public Guardian 801-538-8255 www.dhs.utah.gov/pdf/hot-tips.pdf

Planned Parenthood Association of Utah (Maturation programs)

800-627- 9558 www.plannedparenthood.org/utah/real-life-real-talk.htm

Retired VIPS (Visually Impaired Persons) 801-585-2213

Robert G. Sanderson Community Center for the Deaf

800-860-4860 www.deafservices.utah/gov

Salt Lake County Parks and Recreation 801-468-2299 www.parks-recreation.org

SibShop www.thearc.org/siblingsupport/sibshops-directory.shtml

Social Security Administation 800-772-1213 www.ssa.gov

State Family Council 877-352-2221

The ARC of Utah 801-364-5060 www.arcutah.org

Ticket To Work 801-524-4145 x 3883/801-538-7590

Utah Assistive Technology Foundation 800524-5152 www.uatf.org

Utah Cares www.utahcares.utah.org

Utah Center for Assistive Technology (UCAT) 888-866-5550/ http://www.usor.utah.gov/ucat

Utah Collaborative Medical Home Project 801-584-8584 http://medhome.med.utah.edu

Utah Department of Health Baby Watch Early Intervention Program

801-961-4226 www.utahbabywatch.org

Utah Developmental Disabilites Council 801-533-3965 www.gcpd.org

Utah Industries for the Blind 801-269-0314

Utah Parent Center 801-272-1051 www.utahparentcenter.org

Utah Schools for the Deaf and the Blind, Deafblind Division

801-629-4732 www.usdb.org/departments/DeafBlind

Utah State Office of Education (USOE) 801-538-7500 www.schools.utah.gov

Utah State Office of Rehabilitation (USOR) 801-538-7530 www.usor.utah.gov

Utah State University Center for Person’s with Disabilities

435-797-1981 www.cpd.usu.edu

Utah Transit Authority/Paratransit 801-566-2334 www.rideuta.com/paratransit/

WorkAbility (Medicaid Work Incentives) 877-246-9675 www.workabilityutah.org
To a large extent, prostate professionals in special education and vocational rehabilitation (VR) have been on parallel courses for decades yet with curiously similar goals: successful post-school outcomes (particularly employment) for individuals with disabilities. Born out of different forms of federal legislation, hospital the two fields developed largely as separate systems. Because their only connection was transition-age youth with disabilities preparing for employment, shop perhaps it was easier to remain focused on other concerns (e.g., early childhood and elementary education in inclusive settings for special educators; rehabilitation and employment of adults with psychiatric, drug dependence, and other disabilities for VR counselors). And then, when the systems became overburdened with decreased funding and increased caseload and class sizes, they had every reason to focus on their own survival and not each other. In fact, the overburdening of both systems made it easy to assume the other group would provide transition and employment services for adolescents. Perhaps this is where necessity is the “mother of invention”. For the welfare of youth in transition, it is sheer necessity for special educators who work in transition to gain knowledge and strength by turning to their colleagues in VR. They can perform better as teachers given support by rehabilitation counselors in learning how to prepare youth and their parents for transition. Also, it is sheer necessity for VR counselors to gain knowledge and strength by turning to their colleagues in special education. They can become active and essential participants in transition planning leading to successful employment closures for young adults with disabilities (Oertle & Trach, 2007).

The research literature presents a clear case: interagency collaboration between special educators and VR professionals results in successful outcomes.  Morningstar, Kleinhammer-Tramill, and Lattin (1999) reviewed 13 studies identifying best practices in transition planning and concluded that the key ingredient was interagency collaboration, especially between special education and rehabilitation. Hayward and Schmidt-Davis (2000) found that 63% of youth with disabilities who applied (or whose parents applied) for VR services successfully achieved an employment outcome, compared to 49% who obtained employment without VR services. In this study, employment was associated with less need to rely on financial assistance (Social Security Income), higher levels of self-esteem, and more internally-based locus of control (Hayward & Schmidt-Davis, 2000). Wehman and Targett (2002) found that young adults with disabilities who had received rehabilitation counseling had increased career guidance and higher employment rates compared to young adults without such services.

A collaborative working relationship can ease the workload for both special educators and VR counselors. Collaboration can also produce much-needed outcome data for both special education and VR. The special education teacher produces a young adult with employment or post-secondary educational opportunities and the VR counselor facilitates a successful employment placement. Along the way, special educators learn concepts and procedures from the VR counselor to simplify and facilitate their transition efforts. For example, they learn about Work Opportunity Tax Credits and what it means to employers who hire young adults with disabilities. They learn about benefits planning (e.g., Impairment Related Work Expenses, etc.) and other important information to communicate to parents about future work incentives. They learn about how to approach an employer to promote employment of a young adult with a disability, not from the “right thing to do” perspective but by providing an employee who will fill a critical need of the employer. VR counselors learn about task analysis, on-the-job training, data-based decision making, prompt fading, and numerous teaching strategies that special educators use to achieve independent performance. They learn behavior intervention strategies, including ways to increase and decrease behavior applicable to counseling sessions.  But most important, young adults with disabilities are the benefactors; they are more likely to gain employment because of collaborative efforts of special educators and rehabilitation counselors.

Barriers separating the fields have been intransigent, dating back to the 1980s if not earlier (Hasazi, Gordon, & Roe, 1985).  If the barriers were simple to remove, it would have happened. Therefore, before recommending a collaborative relationship, specific barriers deserve closer inspection. Understanding of the nature of the barriers will lead to more targeted solutions.  Agran, Cain, and Cavin (2002) described results of separate but “mirror-image” surveys completed by 54 special educators and 62 rehabilitation counselors to identify transition barriers. The sample was drawn largely from Utah teachers and rehabilitation counselors. Almost half of rehabilitation counselors reported they had never been asked to attend a transition services IEP even though they had transition-age youth on their caseloads. For those who had attended IEP meetings, 62% indicated they had not played an integral role. Many respondents indicated they had not received information on the youth in transition prior to the meeting and felt like they had nothing to offer. Because transition legislation is regulated by the Office of Special Education Programs, rehabilitation counselors did not perceive the need for their direct involvement in transition services. About half of special education respondents indicated they rarely invited rehabilitation counselors to IEP meetings for transition-age youth. Note, however, that this study pre-dated the 2004 re-authorization of IDEA. The majority of special educator respondents indicated they did not know how to engage rehabilitation counselors in discussion leading to achieving employment for youth in transition. Further, they acknowledged they did not provide information prior to the meeting to inform VR counselors of individual needs. Information from an individual’s educational file cannot, of course, be distributed without prior signed release from the parent/guardian. Finally, some special educators and rehabilitation counselor respondents felt intimidated because they did not understand terms and the freely used acronyms of the other system.

From these data, barriers begin to take on better definition and scope. Perhaps, potential solutions begin to take form as well. The following list delineates some of the barriers and potential solutions. Obviously, solutions are untested at this time.

Barrier 1: Rehabilitation counselors are not being invited to transition services IEP meetings nor are they provided information on an individual’s needs allowing them to prepare as active participants. Potential solution: Not only should rehabilitation counselors be invited, they need information. If acceptable given school district policies, teachers may want to seek parent signature releasing limited information to rehabilitation counselors prior to the meeting, such as current IEP goals, relevant assessment results, interests and preferences, etc. Teachers may want to send a note to the counselor about how the meeting will be conducted (i.e., will the youth direct the meeting or will the teacher and youth work together?), who will serve as team members, and what transition process/outcome may be sought. Please remember that with such large caseloads, it may require setting the appointment a few weeks ahead of time in order to find an open spot in the VR counselor’s schedule. To help with scheduling, it is also helpful to have the IEP meetings at a consistent day and time to the extent possible.

Barrier 2: Once at the meeting, rehabilitation counselors are not being actively engaged as participating team members. Potential solution: the teacher may want to provide the rehabilitation counselor with a list of transition questions prior to the meeting. Although these questions may evolve into different ones at the meeting, they will provide the rehabilitation counselor with a starting point for active engagement. Teachers or the youth need to introduce all team members and make them feel comfortable and confident that they are necessary contributors to the process.

Barrier 3: Research makes frequent reference to team members dispersing after IEP meetings thus placing primary responsibilities on the special education teacher.  Potential solution: before the meeting concludes, the team leader should make assignments with “check in dates” and ask all members to be responsible for certain tasks.

Barrier 4:  Special educators and rehabilitation counselors speak different languages. Potential solution:  create a vocabulary list.  In IEP meetings and in conversations, avoid acronyms; spell out the term and explain what it means.  Respect the listener’s need and desire to understand.  A partial list appears below:

Term                                                                        Definition

IEP (Individualized Educational Plan) A document outlining the specific special education and related services to be provided a student with disabilities, including present level of performance, goals, objectives, and services.
IPE (Individual Plan for Employment) A rehabilitation document that describes one’s employment goal, date for meeting goal, services needed, who will pay for services, and who provides the services.  For students with disabilities who are receiving special education services from a public school and also are determined eligible for VR services, the IPE should be completed and signed before the student leaves the school setting (Szymanski & Parker, 2003).
Transition planning inventories Instruments to identify strengths and needs of various aspects of adult living, including employment, postsecondary education, independent living, interpersonal relationships, and community living (National Secondary Transition Technical Assistance Center, 2010).
Reasonable accommodation A logical adjustment to a job and/or work environment that enables a qualified person with a disability to perform the duties of that position (West, 1991). Accommodations include modifying the physical layout of a job facility to make it accessible, restructuring a job to enable the person with a disability to perform the essential functions, or establishing a modified work schedule (Americans with Disabilities Act, 1990).
Job analysis Gathering objective, and complete data on what the worker does on a particular job, how the work is done, results of the work (e.g., goods produced, services rendered), characteristics of the worker, and context of the work (Materials Development Center, 1982).
Task analysis Breaking down particular job tasks into component parts or sequences (Westling & Fox, 2009).
Transferable skills analysis An assessment of knowledge and skills used on one job that can be used on another job.
Ticket to Work/Work Incentives Improvement Act Legislation designed to remove many of the barriers that previously influenced people’s decisions about going to work because of the concerns over losing health care coverage. The goal of the Ticket Program is to increase opportunities and choices for Social Security disability beneficiaries to obtain employment and VR (http://www.yourtickettowork.com/program_info).
Impairment-Related Work Expenses (IRWE) For eligible individuals, IRWE means that certain impairment-related items and services do not count against one’s gross earnings.
Work Opportunity Tax Credit A Federal tax credit incentive provided to private-sector businesses for hiring individuals from twelve target groups, including individuals with disabilities. The objective is to enable the employees with disabilities to gradually move from economic dependency into self-sufficiency, while the participating employers are compensated by reducing their federal income tax liability. (http://www.doleta.gov/business/incentives/opptax/).
DOT (Dictionary of Occupational Titles) A source of occupational information using a 9-digit classification system to classify occupations (Szymanski & Parker, 2003).
O*NET (Occupational Information Network) An online database for career exploration and job analysis

http://online.onetcenter.org/).

Barrier 5:  Special educators and rehabilitation counselors do not have a single meeting opportunity where they can engage each other in meaningful dialogue.  Potential solution: Contact the Utah State Office of Education or Utah State Office of Rehabilitation for a sample of opportunities.  One such opportunity is the Utah Effective Practices Conference held annually (June 20-23, 2011) on the campus of Utah State University. Many special educators and rehabilitation counselors have collaborated and developed relationships.

In Utah the designated agency for vocational rehabilitation services is the Utah State Office of Rehabilitation (http://www.usor.utah.gov). Most communities have a local office with a VR counselor. If you do not know your VR counselor, give your local USOR office a call and set up a time to meet.

With burgeoning caseloads and diminishing adult services, young adults with disabilities and their families need all the support they can get to achieve successful post-school outcomes. More than ever, achieving employment means that professionals must work together. It is imperative that special educators and rehabilitation counselors create meaningful working relationships (i.e., specifying roles and responsibilities, setting timelines for completion of tasks, reporting on task completion) for the welfare of young adults in transition to employment.

Authors: Bob Morgan, Jared Schultz, and Tracy Woolstenhulme, Utah State University

MH

Teen educates others about his Tourette’s syndrome

In many ways, order unhealthy Christopher Maus is a typical teenager.  The 15-year-old sophomore at Walker High School plays trombone in the band, troche cost enjoys basketball and Guitar Hero with friends, pilule and studies tang soo do, a Korean martial art.

But, Maus, 15, has Tourette’s syndrome, a genetic, neurobiological disorder involving tics—movements or sounds that the body cannot control.  Over the years, Maus said, he has been ridiculed by classmates and misunderstood by teachers.

In an effort to promote understanding about his condition, Maus has been giving presentations about Tourette’s syndrome to his classes since he was in the seventh grade.  He’s also spoken to his church youth group and to an elementary school.

Last year, Maus became Louisiana’s first Tourette Syndrome Association Youth Ambassador, according to a news release from the association. He attended a three-day training program in Washington, D.C. While there, he met with local members of Congress to advocate on behalf of other children with the disorder. He is still the only youth ambassador in the state, his mother, Becky Maus, said.

Maus will be recognized in April by the Council for Exceptional Children with the national Yes I Can! Award. The award is given annually to 27 recipients from across the country who have demonstrated notable accomplishments despite their disabilities.

Maus was nominated in the category of self-advocacy. He was chosen as one of three recipients in the category, his mother said. He will return to Washington in April for the ceremony and hopes to meet with members of Congress again.

“The biggest word you can describe it with is random,” Maus said of having Tourette’s syndrome. His tics include nose wiggling and eye twitching.

During his school presentations, Maus said, he relates having Tourette’s syndrome to other medical conditions his classmates may be more familiar with as diabetes or attention deficit disorder. He also stresses that it is an inherited condition. People inherit Tourette’s syndrome in the same way they inherit eye or hair color, Maus said. Both Maus’ father and older brother have Tourette’s syndrome. They all take medication to help control their tics, but the medicine doesn’t eliminate them completely, Maus said.

In his presentations, Maus also reiterates that people shouldn’t make fun of someone else for being different.

Becky Maus said she wants people to know that her son is available as a peer educator and Tourette’s syndrome spokesperson. The mother-son team is also working with the national TSA to create a local nonprofit support group for the greater Baton Rouge area.

“It’s amazing still how little the public knows or understands about it,” Becky Maus said. “By the time you get your family and your best friends to understand your condition, then you have to move on to your peers and even teachers.”

The support group would be available to provide educational materials to schools and workplaces, dispel common misperceptions, raise awareness in the community, and most importantly, provide emotional support to families affected by Tourette’s syndrome, Becky Maus said.

“It’s been quite a journey for the whole family,” she said. “I’m glad Christopher has decided to speak up.”
The Maus family can be reached at maustsa@cox.net or through the Tourette Syndrome Association website at http://www.tsa-usa.org.