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About Huntington's Disease
Huntington’s disease (HD) is a hereditary, degenerative brain disorder for which there is, at present, no treatment to slow the progression of symptoms and no cure. Most individuals with HD begin to exhibit symptoms between the ages of 30 to 50, and are likely to be employed when first diagnosed. As this genetic disease progresses, it will affect cognitive, motor, and behavioral functioning.
Motor issues often include involuntary movements, difficulty with speech and swallowing, lack of coordination, and fatigue and weakness. Many cognitive functions become limited, such as memory, decision making, critical thinking, multitasking and concentration. Behavioral issues include anxiety, depression, mood swings, and stress intolerance, as well as irritability and impulsivity.
Huntington's Disease and the Americans with Disabilities Act
The ADA does not contain a definitive list of medical conditions that constitute disabilities. Instead, the ADA defines a person with a disability as someone who (1) has a physical or mental impairment that substantially limits one or more "major life activities," (2) has a record of such an impairment, or (3) is regarded as having such an impairment. For more information about how to determine whether a person has a disability under the ADA, see How to Determine Whether a Person Has a Disability under the Americans with Disabilities Act Amendments Act (ADAAA).
Accommodating Employees with Huntington's Disease
People with Huntington's disease may develop some of the limitations discussed below, but seldom develop all of them. Also, the degree of limitation will vary among individuals. Be aware that not all people with Huntington's disease will need accommodations to perform their jobs and many others may only need a few accommodations. The following is only a sample of the possibilities available. Numerous other accommodation solutions may exist.
Questions to Consider:
- What limitations is the employee experiencing?
- How do these limitations affect the employee and the employee’s job performance?
- What specific job tasks are problematic as a result of these limitations?
- What accommodations are available to reduce or eliminate these problems? Are all possible resources being used to determine possible accommodations?
- Once accommodations are in place, would it be useful to meet with the employee to evaluate the effectiveness of the accommodations and to determine whether additional accommodations are needed?
- Do supervisory personnel and employees need training?
Accommodation Ideas:
By Limitation
Attentiveness/Concentration
- Alerting Devices
- Alternative Lighting
- Applications (apps)
- Apps for Memory
- Behavior Modification Techniques
- Calendars and Planners
- Cubicle Doors, Shields, and Shades
- Electronic Organizers
- Environmental Sound Machines / Tinnitus Maskers / White Noise Machines
- Flexible Schedule
- Full Spectrum or Natural Lighting Products
- Job Coaches
- Job Restructuring
- Marginal Functions
- Modified Break Schedule
- Noise Canceling Headsets
- Personal On-Site Paging Devices
- Professional Organizers
- Sound Absorption and Sound Proof Panels
- Task Separation
- Telework, Work from Home, Working Remotely
- Timers and Watches
- Uninterrupted "Off" Work Time
- Verbal Cues
- Visual Schedulers
- Worksite Redesign / Modified Workspace
- Written Instructions
Decreased Stamina/Fatigue
- Accessories for Scooters
- Aide/Assistant/Attendant
- All-Terrain Scooters
- Anti-fatigue Matting
- Elevating Wheelchairs
- Ergonomic and Pneumatic Tools
- Ergonomic Assessments
- Ergonomic Equipment
- Examination and Procedures Chair
- Flexible Schedule
- Head Support for Wheelchairs
- Job Restructuring
- Low Task Chair
- Mechanic's Seats and Creepers
- Multi-Purpose Carts
- Periodic Rest Breaks
- Scooters
- Stand-lean Stools
- Stools for Cutting Hair
- Telework, Work from Home, Working Remotely
- Walkers
- Wearable Anti-fatigue Matting
- Wheelchair Accessible Scales
- Wheelchair Mounts
- Wheelchairs
- Worksite Redesign / Modified Workspace
Handling/Fingering
- Industrial
-
Office Equipment
- Alternative Input Devices
- Alternative Keyboards
- Alternative Mice
- Articulating Keyboard Trays
- Book Holders
- Compact Material Handling
- Ergonomic Equipment
- Expanded Keyboards
- Forearm Support
- Grip Aids
- Keyguards
- Miniature Keyboards
- On-Screen Keyboards
- One-Handed Keyboards
- Page Turners
- Scribe/Notetaker
- Speech Recognition Software
- Typing / Keyboarding Aids
- Writing Aids
- Other
Memory Loss
- Additional Training Time / Training Refreshers
- Apps for Memory
- Calendars and Planners
- Electronic Organizers
- Job Coaches
- Professional Organizers
- Recorded Directives, Messages, Materials
- Reminders
- Social Skill Builders
- Support Person
- Verbal Cues
- Visual Schedulers
- Written Instructions
Organizing/Planning/Prioritizing
- Applications (apps)
- Apps for Organization/ Time Management
- Calendars and Planners
- Color-coded Manuals, Outlines, and Maps
- Electronic Organizers
- Ergonomic Equipment
- Job Coaches
- Job Restructuring
- On-site Mentoring
- Organization Software
- Personal On-Site Paging Devices
- Professional Organizers
- Reminders
- Supervisory Methods
- Task Identification
- Task Separation
- Timers and Watches
- Visual Schedulers
- Written Instructions
Stress Intolerance
- Apps for Anxiety and Stress
- Behavior Modification Techniques
- Counseling/Therapy
- Environmental Sound Machines / Tinnitus Maskers / White Noise Machines
- Flexible Schedule
- Job Restructuring
- Marginal Functions
- Modified Break Schedule
- Supervisory Methods
- Support Animal
- Support Person
By Work Related Function
Communicate
- Accessible Telephones
- Additional Training Time / Training Refreshers
- Aide/Assistant/Attendant
- Apps for Individuals Who are Deaf or Hard of Hearing
- Assistive Listening Devices (personal)
- Assistive Listening Devices and Sound Field System
- Augmentative and Alternative Communication (AAC) Device
- Behavior Modification Techniques
- Bluetooth Products
- Bone Conduction Technology
- Braille Telephones
- Braille TTY
- Captioned Telephone Calls
- CART Services
- CART Services - Remote
- Cellular Telephone Technology: Deaf & Hard of Hearing
- Communication Access Technologies
- Electronic Organizers
- Graphics Design Software
- Handheld Computers (General)
- Hands-free Telephones
- Headsets - Computer (USB, VOIP etc.)
- Headsets - Hearing Aid Compatible, Amplification
- Hearing Carry Over (HCO) TTYs
- Interpreter
- Job Coaches
- Large Visual Display for TTY
- Literacy Skills Development
- Neckloops
- On-site Mentoring
- Outgoing Voice Amplification - Telephone
- Paging Products & Services
- Personal On-Site Paging Devices
- Professional Organizers
- Real-time and Off-line Captioning Services
- Scribe/Notetaker
- Service Animal
- Social Skill Builders
- Speech Recognition Software
- Talking Telephones
- Telecoil Compatible Headsets
- Telephone Amplification
- Telephone Flasher
- Test Tube Holders
- TTY Software
- TTYs (Text Telephones)
- Verbal Responses
- Video Relay Services (VRS)
- Video Remote Interpreting Services (VRI)
- Voice Amplification
- Voice-Carry-Over (VCO) Telephones
- Word Prediction/Completion and Macro Software
- Word Processing Software
- Writing/Editing Software
Stress
- Apps for Anxiety and Stress
- Behavior Modification Techniques
- Counseling/Therapy
- Environmental Sound Machines / Tinnitus Maskers / White Noise Machines
- Flexible Schedule
- Job Coaches
- Job Restructuring
- Marginal Functions
- Modified Break Schedule
- Monitor Mirrors
- Odor Control
- On-site Mentoring
- Service Animal
- Simulated Skylights and Windows
- Strobe Lights
- Supervisory Methods
- Support Animal
- Support Person
- Telework, Work from Home, Working Remotely
- Uninterrupted Work Time
Use Cognitive Function
- Additional Training Time / Training Refreshers
- Aide/Assistant/Attendant
- Color Coded System
- Counting/Measuring Aids
- Electronic Dictionaries
- Electronic Organizers
- Extra Time
- Fractional, Decimal, Statistical, or Scientific Calculators
- Job Coaches
- Line Guides
- Marginal Functions
- Modified Break Schedule
- On-site Mentoring
- Personal On-Site Paging Devices
- Professional Organizers
- Reassignment
- Reminders
- Service Animal
- Social Skill Builders
- Support Person
- Training Modifications
- Uninterrupted Work Time
Work Site Access
- Accessible Toilets and Toilet Seats
- Accessories for Scooters
- Adjustable Workstations for Industrial Settings
- Adjustable Workstations for Office Settings
- All-Terrain Scooters
- Anti-fatigue Matting
- Automatic Door Openers
- Boat Access
- Braille and/or ADA Signage
- Door Knob Grips and Handles
- Examination and Procedures Chair
- Flexible Schedule
- Head Support for Wheelchairs
- High Visibility Floor Tape and Paint
- Low Task Chair
- Portable Ramps
- Ramps
- Scooters
- Service Animal
- Smart Locks/Keyless Entry Locks
- Stair Assists
- Stair Tread/Textured Tape
- Support Animal
- Telework, Work from Home, Working Remotely
- Van Conversion
- Walkers
- Wearable Anti-fatigue Matting
- Wheelchair Accessible Scales
- Wheelchair Carts/Trailers
- Wheelchair Lifts
- Wheelchair Mounts
- Wheelchairs
- Worksite Redesign / Modified Workspace
Work Station Access
- Accessories for Scooters
- Adjustable and Ergonomic School Desks and Equipment
- Adjustable Desk Top Workstations for Office Settings
- Adjustable Workstations for Industrial Settings
- All-Terrain Scooters
- Anti-fatigue Matting
- Articulating Keyboard Trays
- Assist Lift Cushions
- Automatic Door Openers
- Chair Mats
- Chairs for Little People
- Chairs for People who are Tall
- Dual Monitors
- Elevating Lift and Office Chairs
- Ergonomic and Adjustable Office Chairs
- Ergonomic Equipment
- Examination and Procedures Chair
- Expanded Keyboards
- Forearm Support
- Forward Leaning Chairs
- Head Support for Wheelchairs
- Large-Rated Chairs
- Low Task Chair
- Monitor Mirrors
- Monitor Risers
- Mousing Surfaces
- Proper Sitting / Standing Techniques
- Stair Assists
- Stand-lean Stools
- Supine Workstations
- Van Conversion
- Wheelchair Accessible Scales
- Wheelchair Carts/Trailers
- Wheelchair Mounts
- Wheelchairs
- Work Platforms
- Zero Gravity (reclining) Chairs
Situations and Solutions:
The following situations and solutions are real-life examples of accommodations that were made by JAN customers. Because accommodations are made on a case-by-case basis, these examples may not be effective for every workplace but give you an idea about the types of accommodations that are possible.
An aircraft mechanic had to bond hardware on mechanisms, but when he was hungry his tremors that stemmed from Huntington’s would flare.
His employer offered a modified schedule so the employee could eat throughout the day and also offered weighted gloves, wristbands, and an arm stabilizer for the tremor symptoms.
A JAN customer was losing her ability to speak due to Huntington’s disease.
JAN suggested a range of accommodations, from high tech speech augmentation devices to low tech communication boards.
An employee of a mortgage company wasn’t meeting production standards because of typing limitations due to his Huntington’s.
The employer purchased word prediction software and looked into speech recognition software he may be able to use in the future.
A bill and account collector had trouble concentrating due to Huntington’s disease.
JAN suggested and the employer ended up moving the employee’s cubical, using higher cube walls, providing noise absorbing paneling and noise canceling headphones, designating time that is phone-free and visitor-free, changing work hours to quieter times of day, and permitting telework.
A construction worker had Huntington’s disease related depression.
He requested ADA leave to get treatment and a reduced work schedule when he returned back to work, he was accommodated with leave and a modified schedule.
A medical assistant who worked at a hospital had trouble walking because of Huntington’s disease.
JAN explained restructuring the shift so the employee was working in one specific area at a time and reducing walking around the work-site. JAN also discussed mobility devices, sitting while working, handrails along the paths she uses, and portable charts. The employee requested these accommodations, and was accommodated.
JAN Publications & Articles Regarding Huntington's Disease
Publications
Consultants' Corner Articles
Articles
- No Articles available for Huntington's Disease
Blog Posts
- No Blog Posts available for Huntington's Disease
Events Regarding Huntington's Disease
- Upcoming Events
- Past Recorded Module
- Past In-person Training
- Past Exhibit Booths
- Past Webcast Series Training
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Just-in-Time Training Module: Disclosing a Disability in the WorkplaceJanuary 28, 2022
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ADA & Workplace Accommodations - Episode #44May 5, 2022
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The ADA and Workplace Accommodation for Employees with Voice DisordersJanuary 31, 2024
Transcripts
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Low-Key AT: Less-Obvious Options for Entry-Level WorkersMarch 16, 2022
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Accessibility as a Key to InclusionJuly 25, 2022
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Transition and Workplace Accessibility: What’s New in 2023?February 2, 2023
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Together Again: AT for Travel and Inclusive EventsFebruary 3, 2023
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2023 CSUNMarch 17, 2023
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ATIA 2024 ConferenceJanuary 25, 2024
Presenters:
- Teresa Goddard , Lead Consultant – Assistive Technology Services
Presentations
Presenters:
- Teresa Goddard , Lead Consultant – Assistive Technology Services
Presentations
Presenters:
- Teresa Goddard , Lead Consultant – Assistive Technology Services
Presenters:
- Teresa Goddard , Lead Consultant – Assistive Technology Services
- Lisa Mathess , Principal Consultant, ADA Specialist
Presenters:
- Teresa Goddard , Lead Consultant – Assistive Technology Services
- Lisa Mathess , Principal Consultant, ADA Specialist
Presentations
Presenters:
- Teresa Goddard, Lead Consultant, Assistive Technology Services
- Lisa Mathess, Principal Consultant, ADA Specialist
Presentations
Accommodating Educational Professionals: Meeting Workplace Needs with AT
Friday 1-2pm
Grand Ballroom 7B
Session Code: TWA-05
Back on Track with the Interactive Process: When Accommodations Go Off the Rails
Friday 4:30-5:30
Magnolia 2
Session Code: TWA-02
Transition and Workplace Accessibility: What’s New in 2024?
Thursday 4:30-5:30
Magnolia 2
Session Code: TWA-08
Presenters:
- Teresa Goddard, Lead Consultant, Assistive Technology Services
- Lisa Mathess, Principal Consultant, ADA Specialist
Presentations
Accommodating Educational Professionals: Meeting Workplace Needs with AT
Friday 1-2pm
Grand Ballroom 7B
Session Code: TWA-05
Back on Track with the Interactive Process: When Accommodations Go Off the Rails
Friday 4:30-5:30
Magnolia 2
Session Code: TWA-02
Transition and Workplace Accessibility: What’s New in 2024?
Thursday 4:30-5:30
Magnolia 2
Session Code: TWA-08
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ADA UpdateJuly 13, 2021
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AT Update: What’s new in 2021August 10, 2021
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Ask JAN! Expert Q&AOctober 14, 2021
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Return to Work After COVID-19 – Focus on Mental Health and Cognitive LimitationsNovember 18, 2021
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Accommodation Solutions for Autoimmune DisordersDecember 9, 2021
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Next-Level Accommodation and ADA ChallengesJanuary 13, 2022
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ADA and Accommodation Lessons Learned: Stay at Work/Return to Work EditionFebruary 10, 2022
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Ergonomics for TeleworkersMarch 1, 2022
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Accommodation Solutions for Executive Functioning DeficitsMarch 17, 2022
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Accommodation Solutions for Gastrointestinal DisordersApril 14, 2022
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Accommodation and ADA Considerations: Reproductive Disorders and PregnancyMay 12, 2022
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Personal Use or Reasonable Accommodation: What’s What?June 9, 2022
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ADA UpdateJuly 14, 2022
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AT Update 2022August 11, 2022
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Accommodation Solutions for Sleep DisordersSeptember 22, 2022
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Building a Disability-Inclusive OrganizationOctober 13, 2022
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Providing Reasonable Accommodations to Veterans with DisabilitiesNovember 10, 2022
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Ask JAN! Q&AJanuary 12, 2023
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Supports and Services: Accommodations with a HeartbeatFebruary 9, 2023
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What You Should Know About the Impact of Long COVID in the WorkplaceMarch 9, 2023
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Accommodation Solutions for Neurodivergent WorkersApril 13, 2023
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Accommodation Solutions for Fine Motor LimitationsMay 11, 2023
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What to Do When Performance and Conduct Factor Into the Accommodation EquationJune 8, 2023
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ADA Update 2023July 13, 2023
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Assistive Technology (AT) Update: What’s New in 2023August 10, 2023
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Accommodation Solutions: Substance Use DisorderSeptember 14, 2023
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The Way I See It: Accommodation Process Perspectives from Different Points of ViewOctober 12, 2023
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Accommodation Solutions: Respiratory Conditions, Allergies, & Fragrance SensitivityNovember 9, 2023
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Accommodation Solutions for Employees with Intellectual DisabilitiesDecember 12, 2023
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ADA and Beyond Compliance Considerations: Medical DocumentationJanuary 11, 2024
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Ask JAN! Q&A: Sensory Team EditionMarch 14, 2024
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Accommodating Employees with Diverse Cognitive and Neurological NeedsApril 11, 2024
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Ask JAN! Q&A: Cognitive / Neurological Team EditionMay 9, 2024
Presenters:
- Tracie DeFreitas , Program Leader, Director of Training and Outreach
- Jeanne Goldberg is a Senior Attorney Advisor in the Office of Legal Counsel at the U.S. Equal Employment Opportunity Commission.
Handouts
Presentations
Transcripts
Presenters:
- Teresa Goddard , Lead Consultant – Assistive Technology Services
- Matthew McCord , Senior Consultant – Motor Team
Presentations
Transcripts
Presenters:
- Tracie DeFreitas , Program Leader, Director of Training and Outreach
- Melanie Whetzel , Principal Consultant, Team Lead
- Teresa Goddard , Lead Consultant – Assistive Technology Services
- Lisa Mathess , Principal Consultant, ADA Specialist
Presentations
Transcripts
Presenters:
- James Potts , Senior Consultant - Cognitive/Neurological Team
- Melanie Whetzel , Principal Consultant, Team Lead
- Linda Carter Batiste , Director of Services and Publications
Presentations
Transcripts
Presenters:
- Tracie DeFreitas , Program Leader, Director of Training and Outreach
- Teresa Goddard , Lead Consultant – Assistive Technology Services
- Lisa Mathess , Principal Consultant, ADA Specialist
Presentations
Transcripts
Presenters:
- Tracie DeFreitas , Program Leader, Director of Training and Outreach
Presentations
Transcripts
Presenters:
- Tracie DeFreitas , Program Leader, Director of Training and Outreach
- Lisa Mathess , Principal Consultant, ADA Specialist
Presentations
Transcripts
Handouts
Presenters:
- Lisa Mathess , Principal Consultant, ADA Specialist
- Matthew McCord , Senior Consultant – Motor Team
Presentations
Transcripts
Presenters:
- Alexis Popa , Consultant - Cognitive/Neurological Team
- Melanie Whetzel , Principal Consultant, Team Lead
Presentations
Transcripts
Presenters:
- Matthew McCord , Senior Consultant – Motor Team
- Julie Davis , Consultant - Motor Team
Presentations
Transcripts
Presenters:
- Tracie DeFreitas , Program Leader, Director of Training and Outreach
Presentations
Transcripts
Presenters:
- Lisa Mathess , Principal Consultant, ADA Specialist
- Matthew McCord , Senior Consultant – Motor Team
Presentations
Transcripts
Handouts
Presenters:
- Tracie DeFreitas , Program Leader, Director of Training and Outreach
- Jeanne Goldberg - Senior Attorney Advisor, Office of Legal Counsel, Equal Employment Opportunity Commission (EEOC)
Handouts
Presentations
Transcripts
Presenters:
- Teresa Goddard , Lead Consultant – Assistive Technology Services
- Matthew McCord , Senior Consultant – Motor Team
- Christy McCune , Consultant - Sensory Team
Presentations
Handouts
Transcripts
Presenters:
- Alexis Popa , Consultant - Cognitive/Neurological Team
- Melanie Whetzel , Principal Consultant, Team Lead
Presentations
Transcripts
Presenters:
- Tracie DeFreitas , Program Leader, Director of Training and Outreach
- Ellice Switzer, EARN Workplace Disability Inclusion Associate
Presentations
Transcripts
Ellice Switzer, EARN Workplace Disability Inclusion Associate
Ellice is an Extension Associate with the K. Lisa Yang and Hock E. Tan Institute on Employment and Disability. She provides content development, training and technical assistance for EARN. As an Extension Associate, she provides national technical assistance and training on topics related to disability and employment, and U.S. disability policy. Her areas of focus include employer practices to support workforce disability inclusion, demand-side strategies to improve employer engagement among disability service providers and evidence-based practices to support post-school success for youth with disabilities.
Presenters:
- James Potts , Senior Consultant - Cognitive/Neurological Team
- Melanie Whetzel , Principal Consultant, Team Lead
Presentations
Transcripts
Presenters:
- Lisa Mathess , Principal Consultant, ADA Specialist
- Melanie Whetzel , Principal Consultant, Team Lead
- Teresa Goddard , Lead Consultant – Assistive Technology Services
- Tracie DeFreitas , Program Leader, Director of Training and Outreach
Presentations
Transcripts
Presenters:
- James Potts , Senior Consultant - Cognitive/Neurological Team
- Lisa Mathess , Principal Consultant, ADA Specialist
- Tracie DeFreitas , Program Leader, Director of Training and Outreach
Presentations
Transcripts
Presenters:
- Tracie DeFreitas , Program Leader, Director of Training and Outreach
- Terri Rhodes, Chief Executive Officer, Disability Management Employer Coalition (DMEC)
- Bryon Bass, Senior Vice President Workforce Absence and Disability Practice Leader, Sedgwick
- Susanne Bruyere, Co-Director and Co-Principal Director, Employer Assistance and Resource Network on Disability Inclusion (EARN)
Handouts
Presentations
Transcripts
Presenters:
- Melanie Whetzel , Principal Consultant, Team Lead
Presentations
Transcripts
Presenters:
- Julie Davis, Consultant - Motor Team
- Matthew McCord, Senior Consultant - Motor Team
Presentations
Transcripts
Presenters:
- Lisa Mathess, Principal Consultant, ADA Specialist
- Melanie Whetzel, Principal Consultant, Team Lead
- Tracie DeFreitas, Program Leader, Director of Training, Services, and Outreach
Presentations
Transcripts
Presenters:
- Tracie DeFreitas, Program Leader, Director of Training, Services, and Outreach
- Jeanne Goldberg, Equal Employment Opportunity Commission (EEOC)
Presentations
Transcripts
Presenters:
- Matthew McCord, Senior Consultant – Motor Team
- Teresa Goddard, Lead Consultant – Assistive Technology Services
- Jose Gonzalez Lopez, Consultant — Sensory/Motor Teams
Presentations
Transcripts
Presenters:
- James Potts, Senior Consultant - Cognitive/Neurological Team
- Melanie Whetzel, Principal Consultant, Team Lead
- Linda Batiste, Director of Publications and Services
Presentations
Transcripts
Presenters:
- Lisa Mathess, Principal Consultant, ADA Specialist
- Lore Lee, Consultant
- Matthew McCord, Senior Consultant – Motor Team
- Tracie DeFreitas, Program Leader, Director of Training, Services, and Outreach
Presentations
Transcripts
Handouts
Presenters:
- Teresa Goddard, Lead Consultant – Assistive Technology Services
- Jose Gonzalez Lopez, Consultant - Sensory/Motor Teams
Presentations
Transcripts
Presenters:
- Melanie Whetzel, Principal Consultant, Team Lead Cognitive/Neurological Team
Presentations
Transcripts
Presenters:
- Lisa Mathess, Principal Consultant, ADA Specialist
- Tracie DeFreitas, Program Leader, Director of Training and Outreach
Presentations
Transcripts
Handouts
Presenters:
- Jose Gonzalez Lopez, Consultant – Sensory/Motor Teams
- Teresa Goddard, Lead Consultant – Assistive Technology Services
Presentations
Transcripts
Presenters:
- Melanie Whetzel, Principal Consultant, Team Lead
Presentations
Transcripts
Presenters:
- Melanie Whetzel, Principal Consultant, Team Lead
- Bill McCollam, Consultant – Cognitive/Neurological Team
Presentations
Transcripts
Other Information Regarding Huntington's Disease
External Links
- Challenging Behaviors in Huntington’s Disease: Strategies for Patients and Families
- EEOC's Reasonable Accommodation and Undue Hardship Guidance Under the ADA
- How will this affect my employment?
- Life with Huntington’s Disease
- PART 1630—Regulations to Implement the Equal Employment Provisions of the Americans with Disabilities Act
- What Is Huntington’s Disease?
Organizations
- Job Accommodation Network
- Office of Disability Employment Policy
- Alzheimer's Association
- American Speech-Language-Hearing Association
- DNA Learning Center: Cold Spring Harbor Laboratory
- Genetic and Rare Diseases Information Center (GARD)
- Huntington's Disease Society of America
- International Parkinson and Movement Disorder Society
- Mayo Clinic
- MedlinePlus
- National Center for Biotechnology Information
- National Human Genome Research Institute
- National Institute of Neurological Disorders and Stroke
- National Organization for Rare Disorders
- Remedy's Health Communites