Findings and Recommendations
Transition to College, Career and Community as a Catalyst for Health Equity for People with Disabilities
The following document represents the results of a convening held on July 13 of 2016 at the National Education Association in Washington, DC. The meeting and the work leading up to it was sponsored by the New Venture Fund with support from the Robert Wood Johnson Foundation.
Identified Barriers to Post Secondary Transition:
Cultural/Linguistic Challenges
-stigma
-labeling
-low expectations both from self and others
-paternalistic attitudes (pity vs economic benefit)
-underserved populations (homeless, foster, low SES, JJ, rural, LGBTQ, limited English proficiency)
-lack of self-awareness of disability issues and need for self-advocacy
-institutionalized discrimination
-racism
-racial disparities
-lack of support for intersectionality (disability, race, ethnicity, culture)
-adult literacy not prepared to serve adults with cognitive disabilities
Healthcare Challenges
-complex healthcare needs in post-secondary environments
-lack of providers - both knowledge and comfort level
-lack of reliable care, personal assistance
-lack of health literacy (what insurance covers, doesn’t cover, how to make a plan selection)
-emphasis on medical model
-lack of health literacy/PWD not included in research
-medical professionals not responsive to people with disabilities
-insufficient specialists
-lack of trust/issues around confidentiality
-assumption that individuals with disabilities are asexual
-assumption by medical professionals about capability of individual with disability around decision making
-inadequate availability of adult healthcare providers
-youth transitioning to adult healthcare providers
-lack of enforcement of ADA by medical providers
-inconsistency in Medicaid buy in programs
-health involves physical and mental yet behavioral and substance issues often overlooked
Logistical Challenges
-lack of coordinated, accessible transportation
-chronic absenteeism/need for a leave of absence
-lack of financial literacy/fear of losing benefits
-housing (accessibility, cost)
-lack of knowledge of options post-secondary (entrepreneurship, 4 year vs 2 year, small business, apprenticeships, American Job Centers, on the job training)
-integration of emerging technology
-lack of programmatic accessibility in generic workforce development system
-lack of understanding and knowledge about benefits planning
-supports for students after a traumatic event (accident, sexual assault, etc…)
-lack of opportunities to gain work experience
-support for non-traditional paths (not 2-4 year)
-financial aid/not flexible/tied to 4 year timeline
Ineffective Transition Facilitators
-lack of knowledge/expertise of staff
-lack of accessible resources, accurate resources
-lack of student/client involvement and effective informed choice
-inappropriate job matches/poor placements
-ongoing assessments with no end in sight
-lack of competitive, integrated work experience opportunities
-lack of individualized services
-lack of information on pathways to obtain high school diploma
-lack of long term job outlook/transition across the lifespan
-guardianship and lack of family involvement
-sheltered workshops as primary employment option
-lack of basic employability skills beyond just “knowledge”
-not understanding available accommodations for work situations
- lack of accountability in programs
Confusing/Inconsistent Policies and Implementation Issues
-age of transition
-lack of meaningful VR involvement with school age youth
-lack of money to continue/scale up promising practices
-policies that don’t promote competitive, integrated environments
-lack of coordinated, complimentary systems (VR, school, transportation, providers, social security)
-policies not homogenous across disabilities and race
-having social security benefits as the endgame
-problems with VR – eligibility/cost issues/serving people with significant disabilities/lack of expectations
-lack of consistent policies with regarding eligibility/disability definitions across agencies
-inconsistency with resources/differs state by state
-entitlement to eligibility and lack of transparency in process. Need to know where one is in the process
-lack of connecting what we know works with the policy
Participant Identified Successful Transition Factors
-accommodations (policy/attitudes)
-finding ones passion, believing in self
-dignity of failure,
-internships opportunities
-parental expectations for post-secondary activities
-future oriented thinking
-first generation college attendee
-having high expectations for oneself
-access and knowledge of available resources/options
-ability to connect mentors/role models in community
-supportive family/friends/community
-opportunities to develop independence (dignity to fail)
-community supports
-be able to answer the question “what’s next” at end of high school
-concept of a long term plan
-knowledge of navigating workforce system (space to express frustrations)
-collaboration between systems
Identified Strategies to Overcome Barriers
· Texas (Disability Rights Texas)
Ø Hawk Foundation awarded 10M to local area organizations. The collective goal is to engage transition aged youth with mental health diagnosis and their families who live in Paris County, TX. The basis for the work of DR TX is the “transition to independence” model. DR TX’s work is based on five core principles (DR TX focuses on the first three):
1. To provided developmentally appropriate services
2. To promote the diversity/availability(?)of good services
3. To promote the appropriate involvement of the family
4. To provide continuous and coordinated care across systems
5. To provide continuity of care
Ø There will be both a qualitative and quantitative study to evaluate the projects funded by this grant – the hope will be replication or scale up
· Promise Grants
Ø The goal is to promote the work readiness of minors on supplemental security income (SSI)
Ø 6 individual consortia of 5 states each
Ø Systems change focus – policy change and alignment
Ø Action teams coalesce around topic areas
Ø Materials are archived and disseminated (newsletter, website with webinars, etc)
Ø Funding comes from multiple agencies: SSA, ED, DOL, DOJ
Ø Promisetacenter.org
Ø Intentional collaboration between voc rehab, state dept of education, DD state agency, and workforce boards – each ensuring that employment first is a philosophy and expectation for youth with disabilities and their role in serving those youth - has led to very successful outcomes of transition to employment. The goal is very intentional across all these agencies in states funded by PROMISE, and the federal funding is substantial
· Fairfax-Falls Church Community Services Board
Ø System of care for youth in transition
Ø Includes comprehensive case management, residential program with both assisted and independent living and integrated data management system
Ø Links HS, Rehab and MH services
· Alabama UCEDD
Ø Grant working on healthcare transition
Ø Clinicians training in medical schools, nursing schools, and allied health professionals
Ø MCHB grant
Ø Parent Training and Information Centers
Ø Most working on transition through OSEP funding
§ SPAN
§ Autistic Self Advocacy Network Health Transition guide at http://www.spanadvocacy.org/content/asan-healthcare-transition-tool-kit;
§ Our UCEDD guide on being a healthy adult advocating for your health and health care in English and Spanish at http://www.spanadvocacy.org/content/being-healthy-adult-advocating-your-health-and-health-care
Ø Some also receive RSA funding
§ SPAN houses a REACH for Transition grant which is a partnership of with 9 parent centers in 7 NE states building capacity to provide more effective information and support around adult services to parents and youth
· Georgetown Med Center
Ø Health Transition Project
Ø http://www.medstargeorgetown.org/our-services/pediatrics/why-choose-us/patient-and-family-care/transition-of-care-policy-for-youth-and-young-adults/#q=%7B%7D
· IDEA Partnership/CoP and work around transition
§ http://www.ideapartnership.org/creating-community/cop-in-practice/secondary-transition6.html
· http://www.ncwd-youth.info/youth-act
· Project ECHO
Ø Project ECHO is a model for lifelong medical learning and collaborative practice. This program links front-line primary care clinicians with specialist care teams at university medical centers to manage patients who have chronic conditions requiring complex care. It is transforming the way medical knowledge is shared and translated into everyday practice and, in the process, enabling thousands of people in remote and medically underserved communities to get the care they couldn’t easily get before, if at all. The newly launched ECHO Institute, supported by a two-year, $5 million grant from the Robert Wood Johnson Foundation, is working to spread ECHO, both nationally and globally. http://www.rwjf.org/en/how-we-work/grants/grantees/project-echo.html
· Oregon
Ø 7-year integrated employment effort
Ø Hiring of non-traditional healthcare workers to ensure that needs are met
Ø Adequate access to services for mental and physical health – need to consider both pieces!
Ø Movement into “health homes” – person-centered planning for your healthcare needs
Ø Closing the front door of sheltered workshops in several states
· Unified plans that bring the school and employment needs together.
· State leadership forums for kids with disabilities in a number of different states.
· Coaching and mentoring can be successful in changing attitudes and behaviors.
· Making “Schedule A” work for people with disabilities pursuing federal government positions.
Success Stories
· Tennessee
Ø One of the states that became involved with Transition Outcomes Project was spearheaded by Dr. Ed O'Leary, the project encouraged states (TN was one of several) to think beyond compliance on Indicators 13 and 14---more schools/districts in TN and other states through this process understood the importance of students learning self-determination and self-advocacy skills in general and special education classrooms--in addition, before WIOA (pre-employment services), the project encouraged and propelled collaboration between secondary schools and VR and other adult agencies. http://cuttingedj.net/about.html and resources--http://cuttingedj.net/resources.html
· Promise Grants
Ø Many individual success stories archived from main page (web address above)
Ø Story of how an exchange that was culturally relevant opened lines of communication and effected real change in transition outcome for both the youth and the family
· DRTx grant
Ø Training for youth on self-advocacy and legal rights at a college resulted in passionate self-advocates which helped to combat stigma associated with disability
Ø Paris County contracts with DRTx to do educational advocacy with JJ youth – education key to positive health and life outcomes
Ø http://tnoys.org/engaging-empowering-youth-my-success-story/
· Healthcare
Ø Professional organizations taking a proactive role in developing the transition plan and identifying adult providers who can meet the needs of the young people with disabilities.
Ø More effective outreach toward women with disabilities about reproductive health and reproductive care as well as sexual health.
Ø Better connections between healthcare providers and schools
· St. John’s Community Services (SJCS) was recently contacted by a correspondent with NPR, who was writing a story on the closure of DC’s institution, Forest Haven, and how people with disabilities are now fairing some 40 years later. The correspondent’s particular interest focused on employment and the work we did in collaboration with the FCC to customize jobs based on the needs of the agency and the skills of the job seekers we support.
https://wamu.atavist.com/from-institution-to-inclusion#chapter-740164
One person highlighted is the video Alexandre “Alex” was referred to us from RSA, we were able to successfully obtain employment for him at the FCC. As you can see in the video, Alex is enjoying his new job and has plans to take his girlfriend to France to propose!
The need to facilitate change to community-based services and employment for the people we serve is essential and must include, but is not limited to -- leadership support which is critically important to support systems change to employment, and strong partnerships with stakeholders and businesses.
· Prince George’s County Public Schools (Maryland): The Early College High School program does include students with disabilities. They must meet the same entry requirements (qualifying test score), 50% of each incoming class must be 1st generation college and/or Free and Reduced (FARMS) students. Their program is currently entering the planning year of two Early College High Schools and they will have to make a targeted effort to include students with disabilities.
· A variety of promising practices and policies:
o CMS requiring community-based services.
o The participation of individuals with intellectual disabilities in college programs.
o Maryland’s recent passage of a bill to eliminate 14(c) certificates in their state.
o Gallaudet University: Providing training to adults with hearing loss to enable them to provide training to other adults with hearing loss.
o A Texas Hospital: Peer to peer mentoring at a burn clinic
o Dan Marino Foundation: virtual reality software to allow people with disabilities to practice and refine their interviewing skills
o Curriculum from ODEP addressing “soft skills” for people with disabilities
o The FCC: a leader in diversity and hiring people with disabilities; able to select and hire from a large pool of job candidates with disabilities – allows for the selection of the best candidate for the job (see bullet above!).
o Employment First Policies that require the first dollar of support go toward competitive integrated employment services.
Resources
· Mathematica has come out with a review of the literature on employment for low-income adults which is not specifically around disability but certainly is related. You can find the compilation at https://www.mathematica-mpr.com/our-publications-and-findings/projects/employment-strategies-for-low-income-adults-evidence-review?utm_source=SilverpopMailing&utm_medium=email&utm_campaign=RECS%202016%20(5)%20remainder&utm_content=&spMailingID=14590982&spUserID=MTU0MDAwNjkwMQS2&spJobID=781953640&spReportId=NzgxOTUzNjQwS0
· A great resource is the EARN project (Employer Assistance and Resource Network) which provides TA to employers on recruitment, hiring, accommodations, advancement, etc. Changing employer behavior and attitudes.
· ADAP
· "It's my Job, it's my Life: Employment First for Alabamians with Disabilities" -- http://adap.net/employment12092013.pdf: http://www.thinkcollege.net/
· http://www.ncwd-youth.info/information-brief-25 Improving outcomes for youth with disabilities in JJ
· http://www2.ed.gov/about/inits/ed/foster-care/youth-transition-toolkit.pdf
Making the Right Turn: A Guide for Improving Transition Outcomes for Youth with Disabilities in the JJ System http://www.ncwd-youth.info/assets/juvenile_justice/making_the_right_turn.pdf
· Transition Cultural and Linguistic Competence Checklist for Medical Home Teams
http://nccc.georgetown.edu/documents/NCCC_Transition_Checklist.pdf
· Six Core Outcomes and Cultural and Linguistic Competence
An excerpt from our website focusing on children and youth with special health care needs
Outcome 6.
All youth with special health care needs will receive the services necessary to make appropriate transitions to adult health care, work, and independence.
http://nccc.georgetown.edu/projects/cyshcn-outcome6.html
Promoting Cultural Diversity and Cultural and Linguistic Competency: Self- Assessment Checklist for Personnel Providing Services and Supports to LGBTQ Youth and their Families
http://nccc.georgetown.edu/documents/Final%20LGBTQ%20Checklist.pdf
Providing Services and Supports for Youth who are Lesbian, Gay, Bisexual, Transgender, Questioning, Intersex or Two-Spirit
http://nccc.georgetown.edu/documents/lgbtqi2s.pdf
Community Engagement and Partnerships Improve Access to Medical Homes
http://nccc.georgetown.edu/documents/NCCC_PP_Medical%20Homes.pdf
· A Collaborative Interagency, Interdisciplinary Approach to Transition from Adolescence to Adulthood
http://www.aucd.org/template/news.cfm?news_id=8881&parent=295&parent_title=AUCD%20Publications&url=/template/page.cfm?id%3D295
· A Comprehensive Approach to Transition
http://www.aucd.org/docs/publications/transition2_web.pdf
Preliminary List of Recommendations
Congress
• Strengthen existing, and create new, incentives through federal tax code to employ individuals with disabilities in integrated employment environments paying comparable wages
• Increase federal funding for person-centered planning for employment and employment supports for supported employment, customized employment, and self-employment.
• Mandate under IDEA that transition plans include social skills training components and work preparation, such as placements outside of school in apprenticeship or internship programs for those that need them.
• Begin transition planning at age fourteen versus age sixteen.
Federal Agencies
• Work with Office of Personnel Management to encourage employment of individuals with disabilities in integrated employment environments at comparable wages in federal government. Allow internships for people with disabilities to not count against an agency’s allotted number of full-time employees.
• Make “Schedule A” program, designed to help individuals with disabilities obtain employment with federal government, a concrete reality rather than hypothetical possibility.
• Ensure currently required interagency agreements between special education, VR, Medicaid and other state agencies meaningfully describe respective roles of each agency during transition so that there are no gaps in provision of full range of transition services.
State Agencies and Schools
• Improve and enhance workforce preparation programs such as apprenticeships and on the job training to require greater participation by individuals with disabilities.
• Create and disseminate information to assist providers and businesses in developing best practices for competitive employment consistent with a person‘s interests and skills.
• Ensure currently required interagency agreements between special education, VR, Medicaid and other state agencies meaningfully describe respective roles of each agency during transition so that there are no gaps in provision of full range of transition services.