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Plain Language Summary: Grief and Loss in Individuals with Intellectual and Developmental Disabilities
Dealing with grief and loss is a normal part of life for everyone. Someone with an intellectual and/or developmental disability (I/DD) is no different. People with I/DD may have more complicated reactions following a loss given their unique challenges. Among these challenges, it is important to remember that people with I/DD may experience loss more often because they may change caregivers and/or placements as they age.
Staff and care providers working with people with I/DD should help facilitate and support the grieving process. There are five recognized stages of grief: denial, anger, bargaining, depression, and acceptance. Additionally, there are four tasks of the grieving process. These are: accept the reality of the loss, experience the pain of grief, adjust to an environment without the loved one, and withdraw emotional energy to invest in another relationship.
People with I/DD can be just as capable of grieving, experiencing the emotions of loss, and understanding death as those without I/DD. They may, however, express their emotions differently or begin to engage in challenging behaviors (e.g., agitation, self-injurious behavior).
Staff and caregivers should deliver any news and information regarding a death or loss in a way that helps the person with I/DD understand what has happened. Then, the person should be allowed to participate in any grieving rituals in order to move through the grieving process.
To learn more, read the MHDD fact sheet on Grief and Loss in Individuals with I/DD.
When a person turns 18 in the United States, they are called a legal adult. A legal adult is given rights, like voting and signing forms for themselves. When a person becomes a legal adult, they usually become their own legal guardian too. A legal guardian makes other important choices, like medical decisions. Sometimes a judge will decide that it is better to have someone else make those important choices.
Guardianship is when a judge decides someone else should make some important decisions for a person with a disability. The person a judge picks to make choices is called a guardian. A guardian can be a mom or dad or someone else the judge picks. A guardian can make decisions about things like how a person with a disability spends their money. Guardians can also decide what doctors the person needs to see and what medicines they should take. Guardians are supposed to make decisions to keep the other person healthy and safe.
Guardianship is not the only option. Another option to help people with disabilities make decisions is supported decision making. Supported decision making lets the person be their own guardian. This means the person makes their own decisions but they have a team to help. This team is made up of people the person picks like family, friends, support workers and more.
There can be challenges with guardianship and supported decision making. For example, a person with a disability may be given a guardian when they do not need one. Or, a guardian might not put the other person’s needs first.
With supported decision-making, sometimes the team has trouble helping the person make a decision without being too bossy. They have to remember that the person with the disability is the one in charge. The team should only help to make a decision when it is needed. If the person can decide by themselves, then the team doesn’t need to help.
Supported decision making can be a good choice for many people. It can give a person with a disability a safe way to be more independent. For some people, guardianship is the better choice. It is important for a person with a disability to think about what is best for them.
To learn more, read the MHDD fact sheet about Guardianship and Supported Decision Making. You can also visit the Utah Parent Center website to learn more about supported decision making and to view a Self Advocate’s Guide to Supported Decision Making.
Read the full Guardianship and Supported Decision Making fact sheet
Healthcare for Adults with Intellectual and Developmental Disabilities: Behavioral and Mental Health Issues is a toolkit designed for Primary Care providers specifically created for working with people with developmental disabilities who also experience concerns with behavioral or mental health.
How the COVID-19 Pandemic Has Affected Me and Other Autistics
By Kayla Rodriguez
Content Warning: This blog contains potentially disturbing and triggering content. Before continuing, please be aware that the author writes about suicide and self-harm.
I remember it like it was yesterday. It was March 12, 2020. I was at my internship at the Georgia Council on Developmental Disabilities when the world completely changed. The Centers for Disease Control and Prevention announced that the COVID-19 virus had become a worldwide pandemic. I then heard that the governor of Georgia had declared a lockdown on the state and everyone should work from home. Just like that, my internship ended earlier than intended and my life completely changed. I’ve since been dependent on Pandemic Unemployment Assistance which ended, but it will be renewed now that the new COVID relief bill has passed.
I think everyone, including myself, underestimated how difficult this would be. We all thought this pandemic would be over after a couple of months if everyone stayed inside. Unfortunately, the people of the United States, both its citizens and the government, didn’t handle this right. The government started lockdown too late and ended too early. Also, many citizens didn’t stay at home for long.
I have been trying my best with this pandemic. It’s taking a toll on my mental health because I have been staying at home almost all the time since March 2020. I am a type 1 diabetic so I’m high risk. I’ve been staying home to protect myself, my family, and everyone else. Because of this, I’m more lonely and bored than I’ve ever been. Even when I do go out, I always wear a mask. It makes me furious when I see others not taking COVID-19 seriously even though I am and I’m suffering for it.
In May, I tried to kill myself and went to a terrible hospital. I then cut myself in September after the death of my cat (2020 was just the worst). I know I’m not alone because according to the American Academy of Pediatrics, rates of suicidal ideation and attempts were higher in youth during 2020 than during 2019.1
I’ve never been so isolated, and I feel like I have no purpose. I’m more dependent on my mother than ever before and my sleep schedule is out of whack. I also have more vivid dreams since the pandemic started. Vivid dreams and nightmares have increased in others as well due to the stress everyone is experiencing right now.
People think all autistics are anti-social so we would be fine with being quarantined, but not all autistics are like that. In fact, a lot of autistics are the complete opposite. For example, my best friend and I are probably the most social people I know. So naturally, we are struggling a lot with being alone in the house.
I have never been so frustrated and tired with life. I feel like I’m stuck with no way out and something is forcing me to stay stuck. I’ve been dying to get out of the house and go to social events. However, because I’m considered high risk, I’ve been so careful and purposefully do not go out as much as I possibly can. The lack of social interaction has really taken a toll on my mental health this past year. Seeing others gives me life and to me, without others, life is worthless.
I recently reached out to my autistic friends to see if they were struggling with this pandemic as much I was. Turns out, for the most part they were. A friend of mine, who has been especially struggling with the pandemic, says:
“As an autistic person, the COVID 19 pandemic has been emotionally and mentally hard on me causing me anxiety and depression-like symptoms due to too much change and too much uncertainty as for when this will end as well as being socially isolated by not being able to socialize with my friends. Before the pandemic started, I had been eating out every Friday at a very good Indian restaurant with my family; working out at a gym close to home 3 days a week where some social interaction takes place; running outdoors 4 days a week; [and] socializing with friends on the weekends regularly. [Since] the outbreak occurred, I have been ordering takeout from my favorite Indian restaurant; doing at-home workouts in place of my gym days for 3 days a week; and [have] very little social time with my family’s close friends only outdoors with social distancing in place. The good news is that I am able to run outdoors and use my makeshift gym at home. I also can go to work (my company is an essential business since it is healthcare but only work in an office with fewer than 10 people in it), but still have moments that I miss the other aspects such as socializing in person with my friends.
The pandemic also caused me to resent my asthma and resulted in me refusing to accept and live with it. As an autistic person, asthma has negatively impacted me both mentally and emotionally. (…) One thing got me really upset and angry was when [someone], who helps me with my social skills, got upset when my dad’s cousin said that I am low risk with asthma due to my age and healthy lifestyle despite the fact that my dad’s (…) cousin knows a lot more than they do because he is a doctor. They came on too strong about the outbreak by dictating my routine and ordering me to stay home as much as possible. In other words, they were not understanding what I was feeling and used my asthma to make me stay home. [So] I denied my asthma [by] telling them that I don’t have it so they do not perceive me as high risk. Despite all this drama with her, I had to cut off contact with her unfortunately which was a hard decision to make because I felt they were not being understanding of what I was going through. Thankfully, I expect a full recovery from asthma since I stepped down my asthma control medication since last summer (…).
The United States really needs to get its act together on handling the COVID 19 pandemic so it is under control and everyone can safely return back to normal. Thankfully, a COVID 19 vaccine is here so we can resume our lives again. Please wear a mask in public as this is also effective in controlling COVID 19 along with physical distancing, hand washing, and adhering to executive orders and public health guidelines.”
There have strangely been some benefits to the pandemic, however, as [my peer] says:
“Part of quarantine has been strangely satisfying. I’ve enjoyed working from home and having time to pursue my creative activities. I’ve been making costumes, working on my novel, and creating videos with my LEGO sets and figures. It’s been a load of fun. I have time to exercise or sit in nature. I don’t have to ride the bus or the train. I don’t have to climb the hill between the train station and my workplace. I do miss my coworkers and friends, but I’ve been able to interact with others on Zoom, which helps a lot. I’m grateful to have a good family that supports me and friends that are willing to listen when I have problems. I know other folks are suffering, and I should be doing more to help. I just feel like I can’t because I have to save money for an apartment of my own. My heart goes out to all the folks still working in retail or in hospitals. It’s tough work under ordinary conditions, and they must be going through a lot. Hopefully, this period will end soon. Though I’m not looking forward to taking MARTA [public transportation] again.”
Like I mentioned earlier, my best friend has been extremely struggling with this pandemic like me:
“It has disrupted my work schedule as I can no longer report to work and must work from home. I am unable to do socials that allow me to build face-to-face interactions leading to friendship. I have to depend on Zoom for work and social activity. I have to wear a mask whenever I go out and it causes severe condensation on my eyeglasses. I keep more distance from the people around me to avoid COVID.”
Some others have been especially struggling on the financial side:
“My problem has been with health insurance during this COVID-19 pandemic. I can’t get health insurance to cover my needed speech therapy and need counseling services unless I meet a $2500 in-network or $5,000 out-of-network deductible. The problem I have with this is I am an autistic adult who is working two very part-time jobs not always getting enough hours to be able to pay for the monthly bill for speech therapy and counseling services. Something needs to be passed (…) here in Georgia requiring health insurance to cover what autistic adults 18+ need covered so very low-income autistic adults like me don’t have to pay very big bills for needed services like counseling services, (…) speech therapy, etc.”
Some have been able to deal with the pandemic well:
“I was so excited to begin working from home – so relieved to escape the bustle and noise of an open office. However, I lost my job in July, and I suspect the isolation of interacting almost exclusively with my team made the job itself more stressful and contributed to that loss. It sent me into a week of inpatient mental health care, through which I found great professional help and meds. I’ve also gotten more in touch with my Autism and mental health issues. No more trying to pull off the Wonder Woman image.
I’m currently in the first round of applying for SSDI [Social Security Disability Insurance]. For now, I spend my time helping my elderly mom, creating artwork, and writing.”
My autistic friends have stated that while this pandemic hasn’t been all doom and gloom, for the most part it has been a struggle. It doesn’t help that there was a delay in the second COVID relief bill and there was no extra funding for Home and Community Based Services until the recent bill. Not to mention while other countries are giving over $2,000 checks to its citizens every month, the United States has only given out two checks in the entire year of this pandemic. The US government really needs to give more financial support to everyone in this country, but especially for autistic people and disabled people. Also, it has been difficult for disabled people to get the vaccine due to most states not prioritizing disabled people and lack of accessibility at these vaccination sites.
I tested positive for COVID-19 in January. I got the virus not because I was careless- but because someone else was. I’ve been wearing a mask, but obviously someone didn’t, and I got infected. It’s frustrating because you can do everything right like I was and still get it because some people aren’t careful and aren’t taking this virus seriously. I encourage all of you to wear a mask, wash/sanitize your hands, keep 6 feet apart, and quarantine as much as possible until around 60-80% of the population gets the vaccine and the death rate is low. Hopefully, we will achieve herd immunity by summer. Thankfully, as of this writing, I did receive my first dose of the Pfizer vaccine this month and I will receive the second shot in April. Things are definitely looking up, but COVID will never go away and we can never forget the effect that this pandemic had on us all.
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