HRTW-MN CONTACT & ABSRACT

PROBLEM:
Employment is the main concern for youth with chronic illness and disabilities, according to the first large survey of Minnesota youth with disabilities planning transition to work.
The survey also indicated that health providers play a limited role in facilitating and supporting transition. Less than 50 percent of teens surveyed received information on how to make their own medical decisions. In all, teens said they felt they were ill-prepared to plan their future.
The need for providing transition services on a community level that truly address the priorities and concerns of youth is apparent. In addition, better coordination with health providers and employers, is essential. It is time for communities to come together to provide comprehensive transition services that focus on the needs of youth and promote a successful and healthy transition to work and more self-sufficiency.

1. To provide training, information and ongoing support for youth with disabilities, so they are better prepared for a healthy transition to more self-sufficiency.
2. To provide training and information for parents of youth with disabilities about preparation for transition to adulthood.
3. To collaborate and provide information for community health providers to provide transition services that are culturally sensitive for youth with disabilities.
4. To collaborate and provide information to community employers to promote employment opportunities for youth with disabilities.
5. o collaborate with state and local agencies to develop comprehensive community base d transition services that are family-centered and culturally competent and support youth with disabilities to transition to adulthood and more self-sufficiency.

METHODOLOGY:
This project focuses on youth between 12 and 22 years of age and their families in the urban center of St. Paul, Minnesota, as well as, state and local agency personnel, community health professionals, and employers. Multicultural specialists focus on the unique needs of minority communities, including the Southeast Asian and Hispanic communities.

Trainings and information were presented to youth and their families at local schools. Project staff provided information on community resources, planning transition IEPs, SSI, rehabilitation services and self-advocacy. A Pediatric Nurse Practitioner under subcontract with the St.Paul Public Schools provided one on one information and support for teens to learn about managing their own health care needs. An “employment network” was established on the PACER Center web page and provides teens, parents and employers with information about employment and success stories of youth with disabilities working in the community. A newsletter, Looking Ahead, has been developed, translated into Spanish and Hmong and sent to parents of children in special education in St. Paul.

COORDINATION:
Coordination with the various State and local agencies varies according the project goals and includes: 1) coordination with St. Paul Public School in Youth leadership activities, transition health services, and community collaboration; 2) coordination with health clinics at the University of Minnesota and Gillette Children’s Hospital through resident/physician transition training; 3) coordination with MN State Education to insure the inclusion of transition and health issues in the transition guidelines; 4) coordination with community employers to promote employment opportunities for youth with disabilities, and; 5) coordination with Minnesota Children with Special Health Needs in developing and maintaining a focus and current health and transition issues for youth.

EVALUATION:
All activities of the project are carefully evaluated. All training sessions are evaluated individually by participants. Youth involved in the pilot project with the Pediatric Nurse Practitioner received a pre and post assessment to track any change in health behaviors and outcomes.

EXPERIENCE TO DATE:
Many of the activities of the past seven months have built on or been a continuation of the past years experiences. Three new youth groups have been established this year. Six new youth have received individual health and transition support from a Pediatric Nurse Practitioner. Resident /Physician transition training continues on a monthly basis as well as training for other health and education professionals (412 this year). Families (6561 this year) continue to receive information, training, and support. Of these families, 54 Southeast Asian parents met with their county developmental Disability staff to advocate for their own issues and to clarify questions and concerns.

KEY WORDS:
Adolescents with Disabilities, Advocacy, Chronic Illness and Disabilities, Community Participation, Cultural Competence, Eligibility Determination, Employers, Families, Family Center Health Education, Family Professional Collaboration, Hispanics, Information Sources, Interagency Cooperation, Medicaid, Mental Health Services, Parent Education, Parent Professional Communication, Professional Education in Chronic Illness and Disabilities, Public Policy, Rehabilitation, School Health Services, Schools, Service Coordination, Sexuality Education, Southeast Asians, State Systems development, Stress, Supplemental Security Income, Third Party Payers, Title V Programs, Training, Vocational Training, Youth in Transition

[SUMMARY]
HRTW-MN SUMMARY OF ACTIVITIES

Project: Project Youth: FAACTS (Family Centered Community Transition Services)
Coordinator: Diane Hovey
State: Minnesota

Year four of HRTW projects. Ytd = October 1, 2000 to May, 2001

1. How many adolescents with special health care needs/disabilities have received training and/or support to promote self-determination and/or leadership skills? 305

What types of training, support, or leadership skills were provided?

Oct. to Jan.

• Individual support
• Youth Leadership group meetings (4 on-going members) (12/5; 12/112; 12/19)
• Youth participate in interview process for new Youth Trans Spec. (Oct.)
• (youth advisory cat.)
• Nov – Fall Transition Retreat
• Workshops (Nov.)
• Youth Advisory Council
• Life Skills Class
• PACER tour & mini leadership presentation (information & referral category)

• Phone support = 1
• Meetings with youth = 14
• Workshops = 9
• La Opportunidad – Youth Conference = 50
• Youth Leadership Group presentation at TATRA conference = 3
• Youth Leadership Group ( 2/6, 2/20, 3/6, 3/20, 4/3, 4/10, 5/1, 5/8, 5/29, 6/6, 6/8) = 3
• Lifeskills Class: St. Paul Transition Plus (2/13, 2/27, 3/6, 3/16, 4/10, 4/24, 5/8, 5/22) = 15
• The 2000-2001 school year, Mary Yackley MPH and Lara O’Neil RNP – St. Paul School Nurses, worked with 35 youth on piloting the transition health assessment. = 35
• Presentations to students at VECTOR Program (missed in the Oct. to Nov 01 report) = 40
• Work skills Day – talked with youth at the St. Paul area work skills day. Played quiz game on employment skills, distributed information & gather names of interested youth. = 65
• Humboldt High School tour of PACER = 12

What were the outcomes or effectiveness of this training?

• Youth satisfaction with activities is high and they report a value in their participation. The youth who have participated have become involved in more activities as a result of their improved self-determination or leadership skills.

• For the workshops and youth groups the students filled out evaluation forms including questions on what has changed in their life as a result of the training. Discussions were held regarding the students perceptions of the program effectiveness.

2.How many families have participated in training/support to
increase their knowledge of the services and supports available to them. 501 (+26454)

What types of training, support, or leadership skills were provided?

• Oct. to Jan.
• Phone support
• Meetings with families (IEP meeting estimates = 20)
• E-mail contacts
• Transition Years Workshops (11/ 9 &30)
• Mpls. Trans SEAC
• Transition Retreat
• St. Paul Transition Information
• Hmong Housing & SSA information night
• Project Youth web site visits
• Project Youth Fall Newsletter

Feb. to May

• Phone support = 132
• Meetings with families (IEP meetings = 16) all = 30
• E-mail contacts = 20
• Transition Workshops (3/22, 3/29, 4/30 & 5/10, 3/13, 3/17) = 64
• St. Paul Transition Information = 20
• Hmong parent support group & parent meetings = 20
• Parent transition training meeting = 30
• Transition Planning & Self-Determination meetings = 12

*Supports were provided to families of diverse background. Of the families served, 50 were Hmong parents.

Publications for Parents

• Project Youth web site visits = 3920
• Project Youth Spring Newsletter = 10,000
• Transition Tips & Tools – in publication process
• Health Guide to Ready to manage your Health Care Skills - in publication process
• Sexuality Guide for parents, youth, and case managers – in revision

• Parent report the workshop and information meetings to be beneficial in addressing transition related goals for their youth.

3. How many health care professionals, teachers, vocational rehabilitation counselors and other human service professionals have received training/support related to planning and providing effective services/supports to adolescents with special health care needs and their families? 1067

In what manner has this training/support been delivered?

Oct. - Jan

• Monthly CTIC meetings ~ 10-15 professionals/month
• Transition Years Workshops
• Mpls Transition SEAC presentations
• Housing Accessibility Conference
• St. Paul Transition Information Night

Monthly Physician Training at Gillette Children’s & the University of Minnesota - Oct - Jan 01

Feb ’01 to May ‘01

• Ongoing meetings with school health nurses in developing transition health services that promote the self-care skills needed to be healthy and ready to work.
• Conference- “Transition’s White Elephant: Incorporating Health in the Transition Plan” for MN CEC/DCFL = 30
• 771 Surveys were sent to all MN school districts and to the School Nurse Organization on whether or not health was being systematically addressed in the School transition programs for youth with IEP or 504’s = 771
• Meeting with Major health specialty provider regarding the use of the health care skills check list in routine clinic visits. = 4
• Phone support – Assistance given to professionals who called regarding transition related issues = 50
• Meetings with professionals regarding transition services = 43
• Occupation therapy class presentation = 5
• Boy Scouts – training planning for parents and leaders = 2
• Parent transition training meeting = 19
• Planning for Hmong support group = 8
• Hmong parent support group & parent meetings = 6

Has there been follow-up?

• Post-workshop evaluations

• Physicians are more aware of and sensitive youth’s transition needs beyond the traditional medical focus.
• A builder attending the Housing Accessibility Conference reported that he was going to recommend 10 % of housing be built to offer Visitability or accessibility but after listening to the Project Youth presentation changed his mind and will now recommend that 100% of the homes have accessible features.

• This is too difficult to measure – the activities for the youth most certainly are beneficial to their employment status but as a project we do not physically match students to jobs.
• Project Youth is involved in many partnerships that are working towards improving the work opportunities for and expectation of people with disabilities.
• Information on Employment is also being sought out. The web site visits to the PACER employment information site has been 14,997 over this four month time period: Oct - Jan
  14, 997

Web site visits for:
Feb.- May: 1548

SSI
41
123
11
109

Employment Strategies
394
242
283
345

Employment Related Project Activities -- worked/met with ~ 95 professionals

• “When I Grow Up” is a book for young school age children that depict a wide variety of jobs done by people with various disabilities. This book has been compiled and is in the printing process.
• Served on committees to build job possibilities and potentials of youth with disabilities (Americorp, Voc. Rehab, post-secondary education institutions, Dept. or Human Services, Dept. Of Economic Security, MN Ahead, and SSI)
• Conf. Presentation for MNACTE (Minnesota Association for Career and Technical Education Special Needs Personal) on Healthy & Ready to Work – “Ready to manage your own health care?” – presented with St. Paul school nurse – 3 presentations Na

Describe the types of employment and the current satisfaction of the employed youth. Youth are involved in a variety of position including supervisory roles.

5. How many are in a training program (actively preparing) for employment? all

Describe the types of training and preparation.

• Volunteer positions; work training programs; post-secondary education>

• Again this is hard to know. We are not clinic based. However this topic is discussed in youth workshops and is part of the health care skill assessment conducted with the students. The students who participate in the Youth Leadership group see adult physicians but not necessarily in their specialty clinics.

8. How many of the youth directly served by your project have a source of insurance for primary and specialty care as a result of project activities? all

Explain.

9.Have there been any changes in policies at the state or local levels that have occurred as a result of project activities? If yes, please describe briefly.

We have been involved in the development of many communities that influence policy and systems change. This is somewhat difficult to measure since change occurs over time.

• Self –determination
• St. Paul Community Transition team
• Work council on employment
• Americorps meetings
• Children’s Health Consortium

Presentation to policy makers on the importance of “Visitability” (accessibility for youth with disabilities) in the development of independence and social skills important to healthy well-being and future employment.

10. What has been accomplished (established, done) to increase the extent to which service systems are comprehensive, coordinated, family-centered, community-based, and culturally competent?

• Survey sent to all school districts across the state on health and transition – 2 surveys were sent, 1 to the spec. Ed. Directors and 1 to the school health nurses and members of SNOM (School Nurse Organization of Minnesota)
• TV talk show on Transition developed for Hmong families

11. What has been your most significant project activity to date?

• The ongoing support to youth and their families. This support has the most direct and immediate effects. Even though efforts may be concentrated on a few families there is a noticeable ripple effect. The school health piece in developing the importance of the school nurse involvement in a systemic way of helping the youth examine their own health care skills is very valuable. The school nurse has raised interest across the state and the request for the health care skills assessment is about 90%.

12. Are there any other significant project activities or outcomes that have not been addresses?