I am very grateful to have had the opportunity to attend the Disability Policy Seminar (DPS) at the end of March 2022. Due to restraints in traveling due to my dissertation project, I was so glad that this conference was a hybrid event – there was both a virtual platform and an in-person event in D.C. Additionally, I know that having the option of attending virtually made the event accessible to many people with different disabilities who may not have been able to attend otherwise. I hope this option is maintained for the future. Not only did the seminar provide educational content, but it also had a great networking tool for virtual attendees like myself. It helped me to feel like I was really there, interacting with people who care about the same things that I do.
The United States Capitol. Image from the Disability Policy Seminar virtual attendee portal
First, I learned a good deal about Social Security and Supplemental Security Income (SSI) benefits. Being new to the policy arena, I appreciated the educational content provided by the speakers. SSI serves seniors and those with disabilities, particularly those with low income. Many people depend on SSI benefits throughout their day-to-day lives. However, I learned a few surprising things about this system. For one, it has not been updated in years to reflect inflation, which is very high today. This subjects people who depend on this policy to live in poverty. Moreover, if people receiving SSI benefits make too much income from a job, these benefits will be taken away. Disabled people are being told they should work if they are able, but when they do, they are forced to reduce their hours to stay below the required income threshold – this means living day-to-day at a poverty level and not being able to accrue any savings to improve their livelihoods. This system is very unfair and needs to be updated. While there are many other problems with SSI, I will highlight one more that really struck me. If two people receiving SSI benefits get married, you would logically think that they as a couple would receive twice the benefits, right? Wrong! Instead, the benefits received for each person are actually reduced. This means that people with disabilities are being penalized for getting married. I could not believe it when I heard this. This policy needs to change.
Additionally, I learned that we are sorely in need of more funding for home and community-based services (HCBS) and direct support professionals (DSPs). While problems already existed in these areas before COVID-19, the pandemic highlighted these flaws and brought them to the forefront. HCBS, paid through Medicaid, allows people with disabilities to receive the help and services they need in their own homes or where they live in the community. These services may include personal care and help with activities of daily living. HCBS makes a big difference in the lives of many people with disabilities and their families. Without these services, these people may not be able to remain in their homes. Therefore, we need to ensure that funding is continued and increased for HCBS.
Furthermore, the people who put these services into action are DSPs. While their role is vital in helping people with disabilities live where they desire and have a good quality of life, their salaries do not reflect the importance of what they do. Also, due to the low wages, there is a high turnover rate for DSPs, making it difficult for people who need their services to have continuous resources. Without the dedication of DSPs, HCBS would not be possible. Just as no adjustment from inflation was given for SSI benefits, DSP wages have also not been increased with this high inflation rate. The funding for both HCBS and DSPs needs to be updated.
Networking Tool for Virtual Attendees. Image from the Disability Policy Seminar virtual attendee portal
Lastly, in addition to the education content I received from attending DPS, I also appreciated the networking platform for virtual attendees. Half-hour blocks were scheduled during the event where attendees could have face-to-face 5-minute conversations with other attendees. Of all the people logged into the networking platform, participants were randomly paired up to talk with one another. There was also an option to extend to 10 minutes if the conversation was really flowing and both attendees agreed that they needed more time. Through this platform, I was able to meet many wonderful people. I even connected with two self-advocates after the seminar, and we scheduled hour-long sessions to talk further. I learned so much from them and we have agreed to stay in touch.
During these networking sessions, I had one particularly memorable experience that I would like to share. In one of the video calls, I was matched with a gentleman who could not speak. I spoke to him for the 5 minutes, trying to ask him yes or no questions that he could respond to. He seemed to nod and smile several times throughout our call. After the networking sessions were over, I messaged him through an attendee contact tool on the DPS platform. From his response, it was clear that he had understood everything I had said. I am so glad that I was matched up with him. He was so brave to hop on the networking calls despite what others might think. I would not have had the courage to do that. Every day, people like this man are written off, or only their caretakers are spoken to. I think the world would be a better place if everyone had the chance to meet and get to know a person like him.
Thank you LEND and DPS for making this experience possible for me and organizing such an important event!
