AAC: What it is and Why It Matters

 

 

An estimated 4 to 5 million people in the U.S. have disabilities and health conditions that make it difficult to impossible for them to rely on solely if at all their natural speech to effectively communicate with others. This includes children, teenagers, working age adults and older persons with:  

•        developmental disabilities (e.g., autism spectrum disorder [ASD], cerebral palsy, Down syndrome, intellectual disabilities)

•        acquired conditions (e.g., aphasia, TBI, spinal cord injury)
•        long term illnesses (e.g., ALS, dementia) and other conditions [i]

To effectively communicate, those with significant communication disabilities use a wide range of what are known as augmentative and alternative communication (AAC) strategies and technologies. AAC includes all methods persons can use to be understood – e.g., gesturing, writing, typing, pointing to letters, words, or pictures, and devices to generate spoken messages, all of which  can be utilized individually or, more frequently, in combination with one another to augment or replace natural speech. [ii] Most of these individuals face significant barriers in every aspect of life, including family life, education, employment, healthcare, and community living. 

 Today, due to digital, mobile and other technologies, more individuals with significant communication disabilities can access and use the AAC strategies, supports and devices that best address their needs, abilities and aspirations in life.  Yet, for many children, adults and older persons who need AAC such access remains elusive.  As the National Academies of Sciences, Engineering, and Medicine made clear in its report on assistive technology:   “Individuals who communicate with AAC experience significant barriers to obtaining and learning to use AAC technology.”[iii] Multiple factors compound these obstacles, including:  
·         Persistent prejudice and discrimination based on erroneous assumptions such individuals have little to say and contribute to their family, community and nation [iv]

·         The lack of public understanding of the right, abilities, aptitudes and aspirations of people with significant communication disabilities and the role AAC plays in their lives.[v]
·         Insufficient funding, personnel prep and related challenges. [vi]

 Communication FIRST is a the only national organization led by and for persons with significant communication disabilities, our families and allies committed to advancing the rights and opportunities of all individuals that rely on AAC to readily access the AAC strategies, supports and technology needed to lead full life of our choice and in community with all others. 

 

End Notes: 

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[i] Light, J., Beukelman, D.R., McNaughton, D., & Jakobs, T. (October, 2018). New AAC technologies to enhance communication and participation. Poster presented at the NIDILRR 40th Anniversary Celebration, Washington, DC. National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Board on Health Care Services; Committee on the Use of Selected Assistive Products and Technologies in Eliminating or Reducing the Effects of Impairments; Flaubert JL, Spicer CM, Jette AM, editors. The Promise of Assistive Technology to Enhance Activity and Work Participation. Washington (DC): National Academies Press (US); 2017 May 9. Chapter 6, Augmentative and Alternative Communication and Voice Products and Technologies.cites Beukelman DR, Mirenda P. Augmentative and alternative communication: Supporting children and adults with complex communication needs. 4th ed. Baltimore, MD: Paul H. Brookes Publishing Co.; 2013.

[ii] ASHA, Augmentative and alternative communication.  

[iii] Op cited at 1. 

[iv]Melanie Fried-Oken and Hank A.  Bersani, Editors,  Speaking Up and Spelling It Out – Personal Essays on Augmentative and Alternative Communication.  Brookes Publishing, 2000.  Sienkiewicz-Mercer, R. & Kaplan, S.B. (1996), I Raise My Eyes To Say Yes (Whole Health Books); Crossley, R. & McDonald, A. (2010), Annie’s Coming Out (DEAL Books); Fried-Oken, M. &  Bersani, H.A., eds. (2000), Speaking Up and Spelling It Out – Personal Essays on Augmentative and Alternative Communication (Brookes Publishing); Burch, S. & Joyner, H. (2007), Unspeakable: The Story of Junius Wison (University of North Carolina Press); Kedar, I. (2012), Ido in Autismland; and Pena, E.V., ed. (2019), Leaders Around Me: Autobiographies of Autistics who Type, Point, and Spell

[v]  National Academies, op cited at 1.   

[vi] Ibid. 

. 

 

Why We Can’t Wait: 5 Steps DC Must Take to Safeguard the Health and Well Being of People with Disabilities of All Ages During the COVID19 Pandemic.

The following is a summary of five major actions called for in #WeCantWait #HighRiskCOVID19 #DC -- an open letter sent to Mayor Bowser and the Council – on safeguarding the health and independence of people with disabilities of all ages during the pandemic.   

Action 1:  Identify and address unmet needs in HCBS during COVID19 NOW!

Why? Every State has people with unmet HCBS needs even in good times. But for the reasons previously stated, such needs will grow as COVID19 takes its course. Unfortunately, DC is one of the few states that has always unwisely refused to keep a waiting list for either of its Medicaid-funded HCBS waivers.  We, therefore, do not know how much unmet need there is or anything about those whose needs are not being met.

The District must immediately activate an easy way for people to report and have their unmet needs addressed. 

Action 2: Expand DC HCBS waiver eligibility and coverage NOW!

Why? We know that large numbers with HCBS needs do not meet current eligibility requirements or receive services under either of DC waiver.   Furthermore, most people who need this type of assistance to live at home and in their community receive much or all of it from family and friends.  In troubled times like now, many of these networks of support will breakdown and disappear. 

The Mayor and Council must:  

#1:   Expand current waivers or seek additional one, including through emergency legislation, if necessary. 

#2:   Identify and carry out all other steps it can take to address the problem immediately. 

Recommendations on what such steps should include will be offered in the coming days.

Action 3: Support Families Now!   

Why? Nationally, families – mostly mothers and wives – provide much and often all the support and assistance that children, adults, and older persons with disabilities need to live in our community.  They face enormous stresses and strains in the best times. These will grow far more as the pandemic unfolds. 

Ways must be pursued now to ease/prevent this.  Not after it is too late.  

Action 4: Fund the DSP Wage Act NOW!

Why? Even in typical times it is difficult to retain direct support professionals (DSPs). Many have multiple jobs just to make ends meet. During COVID19, they are putting their lives, livelihoods, and their families on the line.

The Direct Service Workers Act must be fully funded so that these workers who are taken for granted are afforded a living wage, benefits, and high regard they deserve from our city NOW.  Fund it NOW!  

Action 5:   Make Clear Disability Discrimination Will Not Be Tolerated NOW!

Why?   There are alarming reports from across the country that people with disabilities are being denied COVID19 tests and treatment due to prejudice that stamp them as “less than” and therefore, more disposable than all others.  

DC must use all District and federal disability human and civil rights laws to prevent and end this discrimination.

COVID19 demands we take all 5 actions NOW.  

The open letter was signed on to by over 20 DC residents with disabilities, family members, advocates and organizations.  See it NOW!  For further information, contact Bob Williams:   rrw1957@gmail.com

Why #WeCantWait: Actions DC Must Take NOW to Blunt COVID19's Impact on People with Disabilities of All Ages who Use Personal Supports

A Public Call to Action to  Mayor Bowser and  DC Council:   

We write as District residents with disabilities, family members, professionals, advocates and taxpayers to urge you, the elected leaders of our great city, to take five actions to safeguard the health and well-being of DC residents with disabilities during the COVID19 pandemic:   

Activate an easy way for people to report and have their unmet needs for home and community-based services (HCBS) and supports addressed NOW!

Expand DC Medicaid HCBS waiver eligibility and coverage NOW!

Offer vital support to families NOW!   

Fully fund the Direct Support Professional (DSP) Wage Act NOW!

Make Clear Disability Discrimination Will Not Be Tolerated NOW!

Several of these actions we implore you to undertake could and should have been taken by you and your predecessors long ago. Promises were made but little was done.  Now such steps and related now be taken as urgent measures to protect public health and equal justice.  

As Dr. King  wrote from a Birmingham jail cell in 1963:   “Time itself is neutral; it can be used either destructively or constructively.”.  The evil and injustice of the COVID19 pandemic will engulf us if we remain silent and fail to anticipate and act to forestall its most predictable consequences.  The time to act constructively is quickly slipping through all our hands. We must act or bear full responsibility for the consequences of remaining inert.  

Based on credible evidence provided by the CDC, WHO, and other experts it is clear that people with significant disabilities who need assistance with everyday tasks like eating, bathing, communicating and shopping are often at heightened risks for COVID19 due to their age and/or other common underlying conditions, health disparities, and other risk factors. It is, therefore, prudent and responsible to assume the following:

1. The home and community-based services (HCBS) and support needs of people with disabilities of every age will increase and intensify as COVID19 conditions worsen in the DC area over the coming weeks and months.
2. Some number of individuals, their families, and direct service workers will contract the virus or live with others that contract it.
3. Additional restrictions will be placed on what every person in DC and the country can do in terms of leaving their homes and the like, and there is no sure way to predict how long such restrictions will last.  

All of this will make life far more difficult for those that need home and community-based services (HCBS) and the families and workers who provide it. To effectively anticipate and try to lessen the worse effects, we believe these actions must be taken due to these unprecedented challenges:   

Action 1:  Identify and address unmet needs in HCBS during COVID19 NOW!
Why? Every State has people with unmet HCBS needs even in good times. But for the reasons previously stated, such needs will grow as COVID19 takes its course. According to the Kaiser Family Foundation  (KFF), the District government reported that as of the end of FY 2018 that all persons living in DC who were eligible for and required HCBS services under one of the two waivers  receive such services.  

We, therefore, request that you apprise the public and the press on:   

1. Whether the FY 2018 data that KFF reported on was accurate at the time and the methods used to gather and assure the accuracy of this information.  
2. The number of persons, including 0 if correct, living in DC who are eligible for and require  HCBS services under one of the two waivers who are not now receiving them as well as the methods used to gather and assure the accuracy of this information.  
3. The methods the District intends to use to continuously assess and address unmet HCBS needs of children, working age persons and seniors with significant disabilities, which will increase rapidly as we live with the consequences of COVID19.

DC is one of the few States that reports that every resident that needs available waiver services receives such support.  The pandemic makes it extremely unlikely that we as a city will be able to meet every unmet need, but we must try.  A key step in doing this is gaining more reliable, real time information and data on those who are not eligible for or receiving needed waiver services in DC. 

We, therefore, request that DC advise the public and the press of the steps the District is taking to assure and improve the quality, real time nature, trustworthiness and transparency of such data and information given its importance to helping to inform the District’s response to the pandemic.    

it is also imperative that the District, immediately create and implement an easy way for people to report and have their unmet needs addressed. 

Action 2: Expand DC HCBS waiver eligibility and coverage NOW!
Why? We know that large numbers with HCBS needs do not meet current eligibility requirements or receive services under either of DC waiver for adults diagnosed as having intellectual disabilities or other adults and seniors with significant disabilities.  Some might be getting the support and assistance they need with essentials like eating, bathing, shopping, and living in the community generally through DC Medicaid’s personal care or home health benefits -- though these services are limited and often insufficient.  There also are few such services and supports for children and youth with disabilities and their families who require them. Furthermore, most people of every age who need this type of assistance to live at home and in their community receive much or all of it from family and friends voluntarily.  This is true in DC, nationally and, indeed, globally.

In troubled times like those we will be living through over the next 6 to 18 months -- perhaps longer -- these networks of support and decency will fray.  Some will vanish completely for reasons that are highly understandable, highly predictable.  

Currently, the District does not operate waiver programs for large numbers of children and adults with developmental, TBI, psychiatric, and other significant disabilities.  This is not because of a lack of demonstrable needs. Rather, it is due to a lack of political will (see an example here).  This leads to untenable consequences in typical times.  As a community, we must all responsibly assume that continuing to pretend such need does not exist will result in far worse as COVID19 tightens its grip.  

DC’s existing HCBS waivers, and possibly additional ones, must be shaped and used to close the growing gaps in support and services. Some say that we should wait for a calmer time and healthier economy before making such reforms.  The fact of the matter is the District government has repeatedly promised and then failed to act on this front. Consequently, many people have had their basic needs go unmet for decades. During the pandemic lives will  increasingly being put on the line due to it.

Members of the District’s disability community and their stakeholders have been told  that the Council must enact legislation before the Executive can expand current waiver authority or seek additional authority. If this is the case, we strongly urge the Executive and Council to craft and enact such legislation.   

Furthermore, the District must identify and carry out all other steps it can take to ameliorate the situation immediately.  We will provide recommendations on what these immediate steps should include in the coming days. Morally, COVID19 demands we take these actions NOW.  

CMS  recently issued guidance to all States and the District on ways they can use Section 1915(c) Medicaid waiver authority and other provisions of the Social Security Act to better meet the HCBS needs of people with disabilities of all ages and the intertwined needs of their families, direct service workers networks of support.   

We implore you all to assure that DC makes the maximal, creative and effective use of this guidance including by soliciting the perspectives, advice and insights  of the disability and aging communities and other States grappling with the same challenges.  

Action 3: Support Families Now!   
Why? Nationally, families – mostly mothers and wives – provide much and often all the support and assistance that children, adults, and older persons with disabilities need to live in our community.  Such women and families face enormous challenges, stresses, and strains in the best times. These will intensify and multiply – perhaps exponentially – as the pandemic unfolds. 

We must be prepared for this reality.  Ways can and must be identified and pursued now to ease and prevent some of those blows. The conversations and actions needed to do this must start now and not after it is too late.  

Please make the best use of the CMS guidance in addressing these issues.  

Action 4: Fund the DSP Wage Act NOW!
Why? Even in typical times it is difficult to retain direct support professionals (DSPs). Many DSPs must have multiple jobs just to make ends meet. The challenges and risks these workers and their families will face during COVID19 likely will be even more daunting. They are putting their lives, livelihoods, and their families on the line. 

The Direct Service Workers Act must be fully funded so that these workers who are so marginalized and taken for granted are afforded a living wage, benefits, and high regard they deserve from our city NOW. 

Please make the best use of the CMS guidance in addressing these issues.  

Action 5:   Make Clear Disability Discrimination Will Not Be Tolerated NOW!
There are alarming reports from across the country that people with disabilities are being COVID19 tests and treatment based on deep seeded prejudice and stereotypes that stamp them as “less than,” inferior to,  and therefore, more disposable than all other human beings.  

As the duly elected government of the District of Columbia, we implore you to individually and collectively condemn and act to prevent, identify, and remedy such abhorrent conduct.  DC should adopt a zero-tolerance policy that commits our city to aggressively employing all District and federal disability human and civil rights laws prevent and remedy all such discrimination. 

These five steps by means the only that are needed but they are among the most fundamental and urgent requiring your action.  Given the increasing gravity of COVID19 and its likely implications for people with disabilities in DC and throughout the Nation, we urge you to respond in writing within seven business days as to what step you will take to move forward on each of the Actions outlined above.  

We would welcome the chance to meet with the Mayor and Council Members directly at the earliest time.  Our lives and the lives of those we love must not be delegated down. Children, adults, and older Americans with disabilities and their families live in every Ward and neighborhood of DC.  You each have a responsibility to personally listen to, understand, to inform as well as be informed by, and represent them in as equally effective a manner as you do all other constituents.  

In the depths of the Great Depression, FDR told a paralyzed country that the times and people demanded “action, action now.” Knowing he had no greater duty he delivered it.  As people with disabilities, family members, and advocates, we make the same demand in the most precarious of times: You must act and act now!

We are ready to assist and support you in every possible way to achieve the vital aims we have outlined.  We fully recognize that some of the actions we are calling for in our letter can and, therefore, must be accomplished within an immediate timeframe.  Others will no doubt take longer to set in motion, and some might need to be accomplished in a different way than what we have proposed. However, we steadfastly believe that We, the City, and you as our leaders can and must find credible, responsible ways to make measurable progress in all five areas in order to reduce the worse impacts of COVID19 on DC residents with disabilities of all ages, their families and direct support professionals 

Because the concerns we have addressed are critical for all DC citizens to learn about,  we will be sharing this call to conscience and action via social media and the press.  

We, therefore, request that as elected officials you advise the public and the press of the steps that the Executive and DC Council  plans to take on the serious concerns and call to action made in our letter.  

Please e mail Bob Williams at rrw1957@gmail.com if you have questions, concerns or other 
matters you would like to follow up on with respect to the letter. Thank you for your service, leadership, and commitment to all DC residents.   

Sincerely,

Bob Williams (principal author), DC Ward 6 resident with disabilities

Helen Rader, DC Ward 6 resident who provides personal assistance to her spouse  

Heidi Case, DC Ward 2 resident with disabilities, Multimodal Accessibility Advisory Council 

Thomas Mangrum, DC Ward 6  resident with disabilities 

Bob Rudney, DC Ward 6 resident with disabilities 

Kris Guin, DC resident with disabilities

Dara Baldwin, DC Ward 5 resident and Disability Activist  
at the Center for Disability Rights

Maria Town, DC Ward 6 resident with disabilities 

Carol Tyson, DC Ward 4 resident with disabilities 

Jim Dickson, DC Ward 4 resident with disabilities 

Becky Ogle, disability civil rights activist 

Nicci Jones, self-advocate 

Thomas Mangrum, DC Ward 6 resident with disabilities 

Joan Christopher, parent 
  
Anna Landre, ANC Commissioner, 2E04
Chapter Co-Leader, DC Metro ADAPT

Anais Sensiba, JD, DC NLG, signing in my personal capacity

Black Lives Matter DC

DC Metro ADAPT

Defending Rights & Dissent

Disability Rights Education and Defense Fund

DMV Disability/Senior Community Group 

Georgetown University Center for Excellence in Developmental Disabilities 

DC Project Action 

ShutDown DC