1. Madelaine E. Sayko CEO & Founder, Cognitive Compass 27. October 2015 © Cognitive Compass 2015

2. 1. Who are persons with cognitive disability 2. What is a cognitive disability 3. The Facts on Employment 4. Cognitive disability in Pennsylvania 5. Challenges 6. Possibilities 7. Solution Set Vocational Service Providers and Caregivers Businesses State Person with a Cognitive Disability 8. Technology © Cognitive Compass 2015

3. ● Cognitive disability constitutes 43% of all disabilities ● Estimated 7-9% of workforce ● 20-50 million people nationally; actual count may be much higher ● 630 Million people globally – and rapidly increasing ● Costs of over 100 billion annually in lost productivity and wages ● Over 500,000 military veterans have experienced TBI’s or PTSD ● Over 3.5 million individuals have Autism Spectrum Disorder © Cognitive Compass 2015

4. ● Aging baby boomers  20% of the work force  76% of them will continue to work past age 65  46% over 65 have disability -after young males they have the highest incidence of cognitive disability. ● 2.4 Million students educated their entire lives under ADA entering workforce ● Mental Health  25% of workforce have a mental health issue – which often includes a cognitive challenge  $80 Billion to $100 billion in lost productivity annually (Employers Health) © Cognitive Compass 2015

5. ● Cognition: the process by which sensory inputs are transformed, reduced, elaborated, stored, recovered, and used. (APA, 2013) ● Includes; the mental processes of attention, memory, comprehending and producing language, monitoring mental and physiological states, calculating, reasoning, planning, problem solving, sequencing, wayfinding and decision making. (from ICF cognitive functions) ● Cognition is not necessarily the same as intelligence © Cognitive Compass 2015

6. ● Standard Definition: Because of a physical, mental, or emotional condition, this individual has more difficulty than the average person with concentrating, remembering, or making decisions ● Attributes Include:  Deficits in initiation, problem solving, abstract reasoning insight, judgement, planning, information processing, interpreting social cues, and organization. (NIH Consensus Development Panel of Rehabilitation of Persons with Traumatic Brain Injury)  They occur across a broad spectrum (Armstrong – continuum of competence)  Cognitive disabilities are not always apparent (invisible)  Many individuals can perform at very high levels but may have a problem with a specific function such as attention or social skills  Cognitive disabilities may include physical attributes such as vision or balance  Many cognitive disabilities improve throughout a lifetime, no matter when they occurred or how (Chapman 2015)

7. ● Executive Function: Deficits in problem solving, abstract reasoning insight, judgement, planning, information processing and organization. (NIH Consensus Development Panel of Rehabilitation of Persons with Traumatic Brain Injury) ● Higher Level Cognitive Functions: Specific mental functions especially dependent on the frontal lobes of the brain, including complex goal-directed behaviors such as decision making, abstract thinking, planning and carrying out plans, mental flexibility, and deciding which behaviors are appropriate under what circumstances, often called executive function. (WHO International Classification Function) © Cognitive Compass 2015

9. ● From Birth ● Autism ● Downs Syndrome ● Gifted ● Mental Health ● LD ● Acquired ● Mental Health ● Aging ● Trauma (PTSD) ● Brain Injury ● Stroke ● Side Effect from something else ● Chronic Pain ● MS ● Chemo ● Medication © Cognitive Compass 2015

10. Usually includes an issue with processing, such as ● Attentional ● Sensory (difficulty with environment, visual) ● Memory ● Organization ● Social Interaction l These are the SAME ISSUES that we all have. And WE are all smart…. Can ALSO be associated with particular strengths ● Determination ● Detail oriented ● Big picture ● Creativity & Innovation – Fluid Intelligence ● Specialized skills – research, good with structure ● Deep funds of knowledge ● Detail oriented ● Want to work ● Creative © Cognitive Compass 2015

11. A person who necessarily: ● Is incapable of learning new tasks or ideas ● Cannot perform complex tasks ● Cannot work in a professional environment ● Cannot perform unstructured work ● Lacks insight or original thought ● Unable to form interpersonal relationships ● Difficulty in working with a team ● Needs heavy supervision ● Never improves ● A cognitive disability is not a determination that a person is incapable, unproductive or has little to contribute. ● It does not necessarily reflect intellectual ability, capacity to learn, character or determination. ● It is not one size fits all - …..Yet this is still the common perception © Cognitive Compass 2015

12. Typical job description terms: ● Detail oriented, able to work well in teams or independently, able to multi-task in a time constrained environment, perfectionist, able to work evenings and weekends, thrives on chaos. ● These are challenging abilities for anyone. © Cognitive Compass 2015

13. From a real job ad – requiring only two years of business experience: ● Manage multiple projects simultaneously to ensure success ● Setup and oversee new projects, and their processes, from conception to implementation and iterate and refine existing projects to improve processes ● Understand company priorities and keep teams focused on the big picture, while keeping track of important details. ● Develop, track, and update project schedules. Monitor project status and manage tasks, scope, and deliverables. ● Provide day-to-day management and status activities between project teams and management team and recognize and force issues to the forefront ● Ensure key project and program-wide roles and responsibilities are defined ● Ensure a positive, collaborative work environment for the team ● Promote adoption of best practices and normalization of processes across the company © Cognitive Compass 2015

14. ● Only 11% of people of working age with cognitive disabilities are engaged in FT employment (nationally). ● 75% of individuals with ABI who obtain employment or return to employment will lose their job within 90 days without supports – and the majority do not have supports. ● Of the 220 people served by the Pennsylvania Head Injury Program (PHIP) all were over 40 – which is typically mid-career. Economic loss for this group can be devastating, impacting both person with disability and families. ● Wage gaps between PWDs and PWOD’s is greatest for those in mid-life (less so for those in 20’s and 60’s) - when it is harder to find new employment. © Cognitive Compass 2015

15. ● Vocational Rehab programs only serve about 3-6% of people with cognitive disabilities. Of these only 50% are placed. Of those it is unknown how many retain jobs more than 90 days. ● Lowest levels of FT employment (outside of persons with self-care and independent living disabilities) ● LOWEST MEDIAN EARNINGS AND HOUSEHOLD INCOME OF ANY DISABILTIY GROUP ● HIGHEST LEVELS OF POVERTY OF ANY DISABILITY GROUP ● LARGEST NUMBER OF INDIVIDUALS NOT WORKING AND LOOKING FOR WORK ● Very challenging for employers ● Only 22% of persons with cognitive disability are in the workforce ● Research has shown that cognitive function improves with vocational engagement. © Cognitive Compass 2015

16. ● Workforce Investment Act 1998 ● Ticket to Work and Work Incentives Improvement Act 1999 ● ADA Amendments of 2008 ● WIOA 2014 ● Employment First 2014 ● Exec Order 13548 – Increasing government employment ● Section 503 of the Rehabilitation act ● Section 508 Standards for Technology Access ● IDEA ● Work Opportunity Tax Credit Yet people remain unemployed at high rates WITH NO OVERALL IMPROVEMENT OVER 40 YEARS © Cognitive Compass 2015

17. ● We are neither in the top 10 or the bottom 10 in labor participation or employment for cognitive disabilities. ● Labor force participation rate for cog dis is 29.3 % (similar to ambulatory which is also very low) – about midpoint in the US (participation rate is the number looking for work AND the number employed) ● Employment rate is 22.2 % - similar to ambulatory which is 21.6 %) – also very low – Pennsylvania ranks exactly mid-point – is the number who are actually working © Cognitive Compass 2015

18. ● 12% of people with cognitive disabilities are looking for work: the largest group of individuals looking for work ● They have the lowest full time employment after individuals with self care and independent living disabilities ● They have the LOWEST MEDIAN EARNINGS AND HOUSEHOLD INCOME OF ANY GROUP and THE HIGHEST RATES OF POVERTY ● Cognitive Disability is the second largest disability group in Pennsylvania – 4.9% in working age adults and the largest group among those 16-20 (the upcoming workforce) © Cognitive Compass 2015

19. ● 72% of Pennsylvanians have a close friend or relative with a disability and 30% consider themselves a PWD ● 74% of Pennsylvanians would support an increase in taxes to help support people with disabilities AND 93% would support increased funding to help PWD’s obtain employment ● 97% of Pennsylvanians see people with disabilities as contributing to their communities ● Half of Pennsylvanians feel that PWD’s are discriminated against © Cognitive Compass 2015

20. WHY IS THE EMPLOYMENT SITUATION FOR PEOPLE WITH COGNITIVE DISABILITIES DIFFICULT TO IMPROVE? © Cognitive Compass 2015

21. ● Needs and abilities vary, often greatly. ● One size does not fit all. ● While employers say they want to hire for abilities, CD is often seen as a lack of ability because it is not a specific disability. ● Don’t know what works - lack of data on PWCD in the workplace. ● Lack of self-awareness and support needs ● Strong resilience skills needed ● Many people with CD are placed in service jobs but 50% of service jobs will disappear in the next 5-10 years. We need to think ahead. © Cognitive Compass 2015

22. ● Available job placements are usually minimum wage, no benefits and few opportunities for career progression. ● Multiple providers, may not know about providers and may have challenges getting to services or filling out information etc. ● Cognition disability is related to physical environment, services, culture, supports, and assistive technologies – necessary pieces may be missing from the workplace or the transition to work process. ● Education and re-training; future focused © Cognitive Compass 2015

23. ● More than 33% of employers say that they have a lack of applicants for open positions ● 17% say they lack people with technical competence ● Focus on positions that are hard to fill – IT, mechanics, laborer, accounting, engineers, ● Thing job characteristics not description ● Eager to work and looking for work –largest number of individuals who are actively seeking work ● Millennials value inclusion and have been educated along side of persons with a range of disabilities. © Cognitive Compass 2015

25. ● Use International Classification of Function to look at particular areas of strength and challenges relative to job tasks and category and use this to guide people to jobs ● Look at the demographics; understand the sub-groups; for age and needs. ● Strengthen ties to the business community through extensive training at executive levels on down. ● Data shows only 12% of employers are seeking new talent sources – we need to be more proactive in presenting this as a viable resource. ● Support investment in ATC development – 95% of clinicians state that ATC is important for PWCD’s to achieve successful employment ● For training think in terms of careers as well as placement; future job market © Cognitive Compass 2015

26. ● Look at abilities NOT JUST SKILLS – skills can be taught if the abilities are there. ● Training in Cognitive Disabilities needed ● Collaborate with ERNs- employee resource networks and small businesses which provide supports for individuals who are moving to employment ● Many individuals who are injured seek to return to work because there is a natural desire to return to what you know. Important to weight existing fund of knowledge against impairments. Learning new skills may be equally difficult. ● Support small business ownership Copyright Cognitive Compass 2015 © Cognitive Compass 2015

27. ● Prepare people with Cognitive Disabilities for the challenges ● Prepare and prevent economic disaster. ● Ask the person with a cognitive disability what they want, what they think. ● Build trust. © Cognitive Compass 2015

28. ● A Princeton study shows that people with disabilities are viewed as warm but not competent by business leaders. Recognize competence and talents. ● MOST IMPORTANT - Culture – zero tolerance for bias ● Engage with the CD community to learn more and reflect on your own understanding ● Give people a chance. Work with them. Long term. ● Do you feel pity or feel charitable about hiring someone with disabilities? Or do you see someone who can contribute and bring new ideas and innovation to the market ● Obtain CD awareness training at EVERY level of the organization. ● Develop a formal disability disclosure and awareness program for all employees © Cognitive Compass 2015

29. ● Provide awareness training of all services and programs within the company such as EAP or ERNS ● Move away from job descriptions that feature impossible to achieve capacities and focus on core functions of what is needed for success ● IF someone cannot perform but is a good worker, consider other options ● Support the use of ATC and training on technology © Cognitive Compass 2015

30. ● If possible bring or identify from within speakers who can share their own experiences and provide education about cognitive differences ● Use positive reinforcement to avoid task anxiety issues. People respond more strongly to negative events than positive (more upset about losing 100 than happy about finding 100). People react 6 times more to a negative interaction than a positive one. Thus negative interactions can actually serve to reduce productivity. Research from HBR indicates that harsh criticism resulted in decreased productivity by 50% of ALL their employees. ● Provide Reasonable accommodations. Realize that 95% of accommodation requests come from employees without disabilities. © Cognitive Compass 2015

31. ● Support small business with disability owners ● Help create seed funding for start-ups for DOBE’s, bring accelerators into the state ● Support the use of Network Resource Groups for OVR and other state agencies that support employment ● Focus on PREVENTATIVE steps – programs that begin BEFORE homelessness, before SSDI ● Implement wage loss insurance program ● STEM training programs – look at the research for where the jobs will be ● More funding for technology development and boots on the ground programs to support employment ● Map people’s abilities to training and jobs – use technology supports ● Improve technology usage in this population ● Think in terms of careers as well as placement ● Look at abilities NOT JUST SKILLS – skills can be taught if the abilities are there. © Cognitive Compass 2015

32. ● Look at overall needs – housing stability, transportation, health coverage ● Marketing campaign to improve the face of cognitive disability – CEO’s with learning disabilities, physicians with BI, leaders with autism, performers with developmental disabilities – and others ● Improve supports to businesses that employee individuals with CD’s ● Apply smart technologies to analyze our programs relative to cohorts ● We need to think ahead – what is the job market in 5 years from now ● Support ERNs- employee resource networks which provide supports for individuals who are moving to employment ● Provide better training programs to all state employees ● Support small business ownership as a path to employment © Cognitive Compass 2015

33. ● Engage, engage, engage  Volunteer – but remember that volunteering task range – start small and easy to build on social skills, time management, memory, focus etc. As executing manual tasks improves ask to take on more mental tasks.  Join community events, use these to learn about your strengths and challenges  Get out of the house – no one ever developed cognitive improvements from playing Candy Crush ● Accept that you will make mistakes and ‘fail’ – but don’t use this as the reason to abandon a path – rather look at why you may have failed and see if there is another approach. ● While there is much talk about neuroplasticity adults must realize that brain changes are not magic – they required repeated and focused efforts – which are often very hard to do after a brain injury. It will not feel ‘good’ or easy or fun. But you need to do it anyway. ● Prepare ●Learn strategies ●Practice keeping to a schedule ●Learn skills © Cognitive Compass 2015

34. ● Respect that a person is trying – even if you think they are not. Instead of judging help them figure out how they may address a problem - realize that they may resist and be negative at first. © Cognitive Compass 2015

35. ● Apply smart technologies to analyze our programs outcomes. ● Use technology to select and connect services ● Assistive Technology for Cognition © Cognitive Compass 2015

36. ● When the culture sees accommodations as a way to allow a person to fully function, as a tool and not as a reward or bonus we can learn how to benefit from this ● Text to speech was designed for communication disorders – now it exists in phones, cars and many other places. ● Half the population has a connection to a disability convenience (Debra Ruh 2012 Taking a Broader View of Disability) ● Opens doors for Everyone ● New ATC devices can prompt users, smart features, facilitates suggestions to users, provide guidance, act as cuing agents, monitor quality of work (spell check anyone??) ● What tools exist? – literally over 20,000 ● How Do I find them ? - a good place to start is AbleData - http://www.abledata.com/http://www.abledata.com/ © Cognitive Compass 2015

37. ● Evernote – information tracking ● PEAT – cognitive reminder system ● Cell Phones or PDA ● Livescribe - audio and text capture system ● Tape recorders ● Timing Devices – Time Timer ● Desktop options for Visibility ● Dragon Speak – voice to text and text to voice ● It’s Done – checklist reminders ● PADLET – group communications, bulletin board ● CORKBOARD – online collaboration tool ● Mind Maps – graphic representation of ideas ● Biometrics (e.g Fitbit) – heart rate variability, stress ● PocketCoach – gives feedback on users progress And many many more…. © Cognitive Compass 2015

38. Copyright Cognitive Compass 2015

39. ● Canary in the Coal Mine -New approaches that are effective for all. Studies have shown that inclusion improves engagement of all employees (DeLoitte) and innovation (IBM and Morgan Stanley) ● People with disabilities are extreme users – virtually anything that has been invented has been invented to augment or supplement ability or inability. ** ** DC BLN, Remarks from Neil Romano, April 19 th 2012 © Cognitive Compass 2015

40. “ Differences are not intended to separate, to alienate. We are different precisely in order to realize our need of one another” Desmond Tutu © Cognitive Compass 2015

41. Contact Information: Madelaine Sayko msayko@cognitivecompass.com (610) 715-2057 © Cognitive Compass 2015