The Importance and Components of Self Advocacy: A Brief Overview

By Sam Shepherd

Introduction 

Self advocacy is an important concept and skill for individuals with developmental disabilities to both know and practice to initiate more independence in both decision making and livelihood. This article shows statistics and elaboration that provide insight on the importance of self advocacy. This article will go over increased independence, abuse and victimization, and staffing shortages within the industry; all of which display the importance of self advocacy for individuals with developmental disabilities.

Self advocacy begins with oneself understanding their needs and communicating their needs, as this the gateway for independent decision making. Moving forward, there are numerous statistics that show the terrifying reality of abuse, neglect, and exploitation that individuals with intellectual and developmental disabilities are more likely to face than the general public. Last, staffing shortages in both special education and in direct service professionals (DSP), or similar positions, both a difficulty in self advocacy as well as emphasizing the importance of self advocacy. To conclude this article, I provide desires and action steps to envision an increase in self advocacy and the awareness of self advocacy at large. 

Disclaimer

Both terms intellectual disability and developmental disability are used throughout the course of this article, but are not used as interchangeable terms. Developmental disabilities include physical disability, intellectual disability, or both in an individual. Whereas, intellectual disability includes adaptive behavior, learning, and intelligence. Someone who has an intellectual disability doesn’t always have a developmental disability, but it is common that an individual has both.

This is important to include because the statistics provided in this paper vary on the specific demographic of the statistic; some displaying statistics under intellectual or cognitive disabilities, while other statistics are provided under the more broadened developmental disability terminology. 

The Key To More Independence 

Self advocacy can be defined as representing oneself in their needs, interests, and beliefs. The term self advocacy is extremely important for individuals with developmental disabilities to understand and exercise. Understanding your legal and human rights is essential in improving your safety and wellbeing. It’s also important to understand your interests and beliefs and to be able to communicate those interests and beliefs to others. 

Self advocacy is the gateway to independence, whether that means being able to live and work independently, have accommodations met in the classroom, and being independent in other day to day activities and routines; all depending on the specific circumstances for an individual with a developmental disability. In addition, it’s vital for families, special education teachers, direct support staff, and other significant people in the lives of individuals with developmental disabilities to understand self advocacy and allow and welcome individuals to exercise self advocacy and express their needs and desires. 

Self advocacy can begin by understanding your personal needs on a daily basis. This can vary based on an individual’s personalized needs, age, living situation, etc.

To add to personal needs on a daily basis, if there are any personal or assistive technology needs to improve your day to day life. The day to day life for children and teens with a developmental disability includes school, which is a critical part of learning and development for everyone growing up. If there is an Individualized Education Plan (IEP) or 504 Plan in place, the individual and their family should recognize the needs that they would need in the classroom to be able to succeed in school. As the Churchill Center and School states on their website, “Self-advocacy gives students with learning disabilities the confidence to ask for the tools they need to be successful in the real world [1].”   

For individuals with developmental disabilities that are 21 and older, the age when special education ends, it’s important for them to express what their desires and needs are as they head into adulthood and for the people around them to be able to help meet their needs and desires, all of which can lead to more independent decision making for individuals with developmental disabilities. 

With understanding needs can come assistive technologies that can make someone’s life more independent. Assistive technology can include things such as the Amazon Echo or a similar device. There are other forms of assistive technology that can be used around the house and in one’s day to day life, such as low tech, mid tech, and hi tech. 

There is additional AI technology to use in the home for individuals who desire to live independently, but may still need some services and/or assistance. There are smart home monitoring systems, featuring cameras and sensors, that can detect falls, unusual activity, emergencies, dispense medications, and more [2]. These types of smart monitoring services can allow an individual with a developmental disability to have the ability to live independently. Now, this is more feasible for some individuals than others, but technology like this has opened that door of opportunity for a lot of people who desire to live independently, but still need assistance in their day to day lives.

It’s important to include assistive technology when discussing self advocacy because, to reiterate an earlier point, it gives individuals the opportunity to identify and express what assistive technological needs that they have, if they need a form of assistance that technology can offer. Moreover, self advocacy goes beyond independence; it’s also about safety and understanding your legal and human rights, and understanding when your rights are being violated. 

Abuse and Victimization

Self advocacy is also an essential part of life for individuals with developmental disabilities due to the increased likelihood of individuals with developmental disabilities being abused, exploited, and neglected when compared to people without intellectual and developmental disabilities. Between 2017 and 2019, the Bureau of Justice Statistics recorded that individuals with cognitive disabilities had the highest rate of violent victimization among every population with a rate of roughly 83.3 per 1,000 people. In addition, violence against individuals with cognitive disabilities was less likely to be reported to police (36%) than the rest of the population [3]. In essence, the rate of victimization is the highest for individuals with cognitive disabilities, yet the lowest rate of reporting crimes against this more vulnerable population. This is the unfortunate reality for many individuals with cognitive disabilities.  

In addition, roughly 90% of individuals with developmental disabilities will experience sexual assault in their lifetime [4]. So, about only 1 out of every 10 individuals with a developmental disability won’t experience sexual assault in their lifetime. Not only that, but 49% of individuals with developmental disabilities will experience sexual abuse ten times in their lifetime [5]. To add, individuals with intellectual disabilities are 7 times more likely to experience sexual assault than the rest of the population [4]. These are concerning statistics as a whole, especially if you or a loved one have an intellectual and/or developmental disability.

As well as being more prone to sexual abuse, Rainn explains that “Many people with disabilities may not understand or lack information about healthy sexuality and the types of touching that are appropriate or inappropriate [6].” This in hand increases the vulnerability of being sexually abused for individuals with intellectual and developmental disabilities. So not only is the situation not being reported in many circumstances, but the same occurrence of abuse is more likely to prolong. This is one of the many reasons why self advocacy is crucial for individuals with developmental disabilities, to understand human rights and when they are being violated, especially the concept of consent and when one is being sexually violated and exploited. 

With these statistics provided, it's important to also contribute that there are multiple living arrangements for individuals with developmental disabilities, including living with family, group home setting, or institution. Living away from family not only can decrease their ability to make their own decisions, but it can also increase their risk for abuse, exploitation, and neglect when their primary caregiver is a staff member not related to them compared to living with family as the primary caregiver. As The Disability Justice Resource Center stated on their website, “victims who are abused in group settings may have limited access to police, advocates, medical or social services representatives, or others who can intervene and help [7].” 

This in hand can make group living a revitalized harsh institutionalization compared to a positive avenue of moving out of their family home, or for those who don’t have a family home, a safe living environment that everyone is entitled to. 

Some of the ways that abuse may be prevalent, especially in a residential care facility or group home may include the following: refusing to help with essential tasks (such as feeding, personal care, distributing medications) denying access to resources, appointments, and essential assistive technology (such as mobility devices), threatening abandonment or physical harm, sexual assault, using the disability to justify any negative actions, and more [8].

However, abuses aren’t limited to only individuals who live away from their families. 

Furthermore, individuals with developmental disabilities are also more likely to be abused by a caregiver or someone they know as well as being repeatedly abused by the same person [7]. This perplexes the matter further when considering that abuses and exploitation can happen within the home as well, whether it be by a parent, sibling, or extended family. Theoretically speaking, if an individual were to be abused at home while living with their family, then moved into a group home, where they may have less access to resources and emergency help while being abused and exploited; where is the safety net?    

There are obviously different circumstances for each individual with a developmental disability, but what remains essential is the values that self advocacy brings to individuals with developmental disabilities. 

In addition to the crimes that are more likely to occur amongst individuals with developmental disabilities, the turnover in direct staff positions as well as special education teacher shortages can also impact the success of individuals with developmental disabilities, hence the importance of self advocacy. 

Shortages and High Turnover

The turnover rate in Direct Support Professionals has been an alarming and ongoing issue for years, being around 50%, with 1 in every 8 DSP positions being vacant [9]. To further the need for self advocacy, as quoted from Relias, “frequent changes in caregivers, being institutionalized or hospitalized, and frequent lack of choice and bodily autonomy are all scenarios that can feel traumatic [10].” In regards to frequent changes in caregivers, this can cause a distress or lack of feeling safe for individuals with developmental disabilities that this occurs to. The same can be said for individuals who are placed in group homes or similar settings. The lack of personal choice is the reason why self advocacy is so vital to individuals with developmental disabilities; to be able to make decisions that serve their best interests. The issue with staff shortages and high turnover is also occurring at a much earlier age in many individuals’ lives, that being special education. 

In a nationwide survey conducted in 2022, an astounding 65% of public schools reported that they were understaffed in their special education department [11]. Special education teacher shortages have made it more difficult for students to have their IEPs and/or 504 Plans fulfilled, even though it is their legal right to have their IEP and/or 504 Plans and additional accommodations met, all of which heightens the need for self advocacy. Whereas, if one’s individualized needs are not met, they are in hand being neglected; perhaps not by direct choice, but by the circumstances being faced within special education. In addition, staff shortages not only affect teachers and students, but it also affects parents. For parents, staffing shortages can have a negative effect on communication and collaboration with their child’s special education teacher, including IEP meetings and progress in their child’s development [12]. 

Desirable Outcomes and Action Steps

With all of the statistics and detail being provided, here are some desirable outcomes and action steps that will improve self advocacy practices moving forward.

1. Giving a Voice to every individual with a developmental disability

   1. While this is our mission statement, it is especially true in regards to self advocacy, because if we don’t try to hear what individuals with developmental disabilities have to say or communicate, we are then neglectful of their needs as well as placing limitations on their lives as a whole. 

2. Accountability towards abusers

   1. There needs to be accountability on all levels: workers and coworkers in the field, police, courts, etc. 

3. Accessible Training and Resources for Self Advocacy

   1. There should be accessible information regarding self advocacy, which is what we, 3DA, are continuing to build and expand upon. In addition, there should be accessible self advocacy training and accessible information regarding training opportunities made more available. 

   2. While there are numerous training avenues available for self advocacy, such as LEND and other collegiate programs, as well as other in-person and online programs. It’s important that information regarding these programs are accessible and well known for individuals with developmental disabilities as well as their families. 

4. Develop and further retention strategies for both special education teachers and direct support staff. 

   1. Finding the ways and means to attract and retain high quality employyees within special education and direct support is pivotal moving forward.

Additional action steps are laid out in detail on our Self Advocacy page, where you can learn more about self advocacy and other important topics regarding developmental disabilities. 

Sources: 

[1] Churchill Center and School, 30 Apr. 2024, www.churchillstl.org/. 

[2] Rumaisa. “Smart Home Monitoring Integrates AI.” Health Information Technology Solutions, 29 Aug. 2023, healthinformationtechnologysolutions.com/smart-home-monitoring-integrates-ai/. 

[3] Harrell, Erika. “Crime Against Persons with Disabilities, 2009–2019 – Statistical Tables.” Bureau of Justice Statistics, Nov. 2021, bjs.ojp.gov/library/publications/crime-against-persons-disabilities-2009-2019-statistical-tables. 

[4] “The Disability Community & Sexual Violence.” Now.Org, now.org/wp-content/uploads/2018/05/Disabled-Women-Sexual-Violence-4.pdf. Accessed 25 Apr. 2024. 

[5] Morgan, Cameron. “Center for Disability Rights.” The Unacknowledged Crisis of Violence Against Disabled People – Center for Disability Rights, cdrnys.org/blog/advocacy/the-unacknowledged-crisis-of-violence-against-disabled-people. Accessed 25 Apr. 2024. 

[6] “Sexual Abuse of People with Disabilities.” RAINN, www.rainn.org/articles/sexual-abuse-people-disabilities. Accessed 25 Apr. 2024. 

[7] “Abuse and Exploitation of People with Developmental Disabilities.” Disability Justice, 20 Apr. 2023, disabilityjustice.org/justice-denied/abuse-and-exploitation/. 

[8] Families, Sanctuary for. “The Links between Disability & Domestic Violence.” Sanctuary For Families, 28 July 2022, sanctuaryforfamilies.org/disability-domestic-violence/. 

[9] “DSP Workforce.” ANCOR, 18 Aug. 2022, www.ancor.org/priorities/dsp-workforce/. 

[10] Baker, Jordan. “Addressing Trauma and Abuse in Individuals with Intellectual and Developmental Disabilities.” Relias, 22 June 2023, www.relias.com/blog/trauma-informed-care-idd

[11] “Inside IES Research.” IES, 22 May 2023, ies.ed.gov/blogs/research/post/special-educator-shortage-examining-teacher-burnout-and-mental-health.

[12] Group, FocusedEDU Staffing. “The Effects of the Educational Staffing Shortage on Special Education Program.” LinkedIn, 1 May 2023, www.linkedin.com/pulse/effects-educational-staffing-shortage-special-education/.