09 Jan SILC Welcomes New Associate Director
by Francisca Guzman, SILC TN Associate Director
One of my cousins has an 18-year-old son, Jaime, who has a developmental disability. Being from a large family, there was little thought given to this fact. Jaime was a member of the family, and he and his parents just needed a bit of extra assistance.
When I first met Jaime, he was four and his care, though complicated, did not have many of the physical demands that accompany it now. Lifting him, bathing, meals, and support with those daily tasks were made easier by his physical size. At eighteen, those same tasks are not carried out as easily and those that one person could manage on their own, often require the assistance of another person.
Those challenges aside, Jaime’s parents cannot imagine handing the care of their son to anyone else. They also could never imagine Jamie living in a nursing home. Yet, they cannot help but worry about Jamie’s long-term prospects for being in the community and what his care will look like in the future. In many ways, the reasons behind the vision and concerns that they have for him have a lot to do with culture and personal values. As I think about it, the way that Jamie is cared for her is reminiscent of the care we would give an elder in my community back in El Salvador, regardless of whether they have a disability or not.
That said, after working in the disability community for the past seven years, I know that cultural expectations and values aside, my cousin’s ideas about the kind of life Jaime can lead are a result of language barriers, lack of familiarity with the disability services system (despite being part of it for 18 years), and the lack of coordination that still exists to facilitate the transition from school to community. All of these are challenges that most families and individuals with a disability confront multiple times. These are also barriers that the Statewide Independent Living Council (SILC) works to address through education and systemic advocacy.
When I say language barrier, it is easy to assume that I am just referring to limited English language proficiency. It is also easy to assume that this only affects immigrant families. However, language barriers come in myriad ways for people with disabilities. Maybe their primary language is American Sign Language (ASL), which is grammatically different from spoken English. Maybe they communicate with a tablet, or just read at a 5th grade level. Or maybe, they have a Master’s degree, but find the jargon and endless acronym soup daunting. Making information and providing it an accessible manner is at the core of the IL philosophy, for it is difficult for someone to make choices about the life they want live—Self-Determination—when they cannot access information or easily understand their options. Peer mentorship is one service employed by the IL Network to remove this barrier, particularly when helping someone make the transition from a nursing home to living back in the community. Receiving advice and knowledge from someone who has personal experience navigating that journey is invaluable for families and individuals looking to make the transition for themselves.
I’ll discuss the last two barriers together, because encountering one usually results in facing the other. For example, last week I called Comcast to discuss an item that was new on our invoice. I dialed the number and after a brief wait, a customer service agent answered the phone. I proceeded to explain the nature of my call after which the agent explained that I had to call another number. I asked some information as to where I would be calling and what information I would need to have ready. The agent was as helpful as she could be, but I didn’t feel any more prepared. Long story short: I was on the phone with Comcast for close to three hours, spoke to six agents in four different departments! All this to get an answer about the random $19.95 charge in our bill.
Now imagine that scenario, but on a much larger scale involving often times multiple agencies and stakeholders. For Jaime and his parents these could (should) include: teachers and school administrators, primary care doctor, specialists, TennCare, his MCO provider (Amerigroup to name one), DIDD, Social Security Administration, Pathfinder, Empower Tennessee, STEP, etc. Mind you, this list is not anywhere close to being exhaustive. For Jaime to successfully transition from school to community, his parents need to communicate with all of these entities and often get them to work with each other. This process can involve countless phone calls, emails, meetings, letters, documents, medical records, and even possibly finding access to a fax machine. Is anyone tired already?
It is improving this scenario that excites me as I begin my work at the SILC, an agency whose mission it is to make independent living not just a dream, but a reality for people with disabilities. By providing technical assistance and support to the network of Centers for Independent Living across the state and engaging in systems advocacy at the local, state, and federal level, we can begin to improve not only the information and resources available to people with disabilities and their families, but also make it easier for them to access and make connections.
For my cousin’s family, reducing these barriers would mean that they would not find it as scary and daunting to access the financial and medical resources that would allow for them to provide Jaime’s care at home. With siblings and extended family coming in and out, Jaime is not isolated from his community, even joining in on the raucous holiday celebrations. This is Jaime’s version of independent living and if our systems and service delivery work properly, he should have this option.
Options and being able to make choices is a central tenant of independence. When we remove language barriers, increase the transparency in the system so that it is easier to understand, and create coordination in service delivery, as a community we then make it easier for people with disabilities to have that same level of independence.