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Ever feel like you’re on an uphill battle with no clear end in sight? I think everybody has at some point in their life. Whether it’s with health issues, relationship issues, financial issues, work issues, or a combination of things, most people face some kind of adversity during life. I like Robin Roberts’ quote: “Everybody has something.” Although it may seem like it, nobody has a perfect life. Every single person has some adversity. Obviously, there are many different perceptions when it comes to the challenges people face. What may be a major crisis to one person, might seem like a small bump in the road to somebody else. It’s often assumed that people with disabilities face more challenges than the average person. Regardless of what the issue may be, facing adversity is part of life.
Why am I writing another entry about dealing with adversity? It seems like it’s often the general topic of most of my articles, right? Yes, I’m well aware of that; it’s my hope that I’m helping spread awareness by sharing my perspective and experiences. I feel that facing adversity and sharing how one perseveres through it is a key part of advocacy.
The past two months, I’ve faced my fair share of challenges. In past entries, I’ve discussed how my parents and I were looking into different care options. Long story short, in the beginning of November, we thought we had found a home care agency that billed Medical Assistance that could meet my needs. My mom and I met with the nurse in mid-November and did the initial assessment. Many calls and emails with the scheduler were done, and it was eventually decided that their workers would shadow my Self-Directed Personal Care (SDPC) workers the first two weeks of December and then the agency would take over the first week of January. I had a planned surgery scheduled in mid-December and had planned to be at my parents a few weeks recovering over the holiday season. I thought things were lining up just perfectly. I’d end with my SDPC workers (besides my parents) right before surgery, have the surgery, recover and enjoy the holidays at my parents, and start with the agency in the new year.
In late November, I had to let my SDPC workers know that people from an agency would be coming in to shadow and that the agency would be taking over in January. It was really hard making that announcement. I felt absolutely horrible having to let them go, but I was hopeful that this would be the answer to my situation. December came and the agency started shadowing. They had four or five people come in during various shifts. Admittedly, it was a little awkward having the agency workers observe the people who were losing their jobs, but the workers understood and made the best of the situation. It’s never easy having new people take care of you, but training was going ok until the second week in someone from the agency said, “we can’t give meds, so I don’t know what they’re going to do.” Wait! What? I take multiple medications each morning. Obviously, I can tell people which medication I need, but I physically am not able to put pills in my mouth. I had my mom call the office right away and she left a message asking about it. A few hours I received an email saying that was correct—their workers cannot give medication. They wondered if I could have somebody come in and do meds each morning before the morning shift. That totally defeats the purpose of having an agency! With other agencies I’ve had, they’ve had a nurse set up the meds in pill containers for two-week time periods, and then the workers could give me pills out of the container rather than from the med bottles; however, this agency didn’t even allow that. There was some major miscommunication along the way because when mom and I initially met with the nurse, she physically had the pill bottles in her hand and wrote down each medication, but never said their workers couldn’t give meds (and we discussed how I have to have somebody feed me). Furthermore, what’s crazy is that med administration is listed as a class they offer for workers on their website! After I got the email, I called my parents freaking out—what were we going to do? I had given the four or five SDPC notice and hadn’t hired anyone new in months anticipating switching to an agency. Luckily, my great parents drove up and we devised a plan. I had no choice, but to stay on SDPC and keep hiring my own workers. Thankfully, about three of my workers were still interested in working with me. We’re back to hiring people and scrambling to fill shifts, but it’s our only option at this point. This not only affects me, it also affects my parents. Especially with the cold weather here, being newly retired, they desperately want to travel; however, with the uncertainty of my care situation, they can’t leave the state. It’s very frustrating for both them and I.
In addition to the care debacle, I’ve had some unforeseen health issues arise. The planned surgery in December to replace my Baclofen pump (which drips a muscle relaxant into my spinal fluid) went fine, but a few weeks later, my muscle spasticity went haywire. After trips to the ER and multiple tests, it was thought I needed another surgery to correct the pump. They went in and checked everything out; it turns out everything looked fine. They aren’t sure what caused the drastic increase in spasticity, but now I have steps I can take to help decrease it when it happens. While I’m glad we have solutions to help with the issue, it’s just one more side effect of cerebral palsy to deal with.
My wish for a fresh start in 2019 didn’t happen like I had hoped. In fact, its been just the opposite. Life throws people all different kinds of curves. People deal with challenges in many different ways; some good, some bad. People’s true colors show when they’re faced with adversity. Although, very hard to do at times, when we’re faced with unforeseen challenges, we must put one foot in front of the other and persevere.
***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.
Two Wisconsin senators are working on legislation to remove the term "mental retardation" and all its derivatives from state code and replace it with the words "intellectual disability." The bill mirrors legislation former Gov. Scott Walker signed in 2012 that removed "mental retardation" from state statute.
DISABILITY SCOOP: Government Shutdown Takes Toll On People With Disabilities
By SD Network, 2019-01-23
People with disabilities are feeling the effects of the country's longest government shutdown ever. Although some of the primary agencies that assist people with disabilities remain open, things such as subsidized housing and food stamps are affected. Since the federal government is one of the largest employers people with disabilities, many people are out of work as well. Things such as caregiver background checks are being put on hold also.
WISCONSIN PUBLIC RADIO: Older Adults Caring For Adult Children With Disabilities Find Connections Amid Uncertainty
By SD Network, 2019-01-23
Many parents who have adult children with disabilities often worry about the future. What's going to happen to the individual when they no longer care for him/her? A group of parents in Milwaukee meet monthly to discuss these fears and brainstorm solutions together.
- Is at least 18 years old
- Has a neurological diagnosis (such as but not limited to post-polio syndrome, spinal cord injury, multiple sclerosis) for at least 6 months.
- Use a wheelchair (manual or power) at least 75% of your mobility time inside your home and 100% of the time outside your home.
- Has a computer with internet access.
- Is able to read and understand English.
T-Mobile Survey regarding How People with Visual Disabilities access Television
By SD Network, 2019-01-16
T-Mobile is developing a new television service and has begun to implement accessibility features for the individuals with visual disabilities. They are interested in understanding how people with a visual impairment access television. The questions relate to finding out what this population likes and dislikes about currently available accessibility features. What features are most critical to them while accessing television? What improvements would they like to see? What features are perfect as is?
They are in search of respondents who are over 18 and have a visual disability such as low vision, or are blind, regardless of if they currently watch television or use accessibility features.
Those who complete the 15 min survey will receive an electronic $15 Amazon Gift Card for their time.
This is a test link to the survey. This link is the exact survey but you can play around on it all you like without the results being recorded as a true respondent.
https://layer3tv.getfeedback.com/preview/aYik1VlQ
If you would like your opinions on the matter recorded and become eligible for the Amazon Gift Card, this is the true survey link:
ADMINISTRATION FOR COMMUNITY LIVING: New Supplementary Report and Fact Sheet from the Evaluation of the National Family Caregiver Support Program
By SD Network, 2019-01-16
The Administration for Community Living (ACL) conducted a two-part evaluation of the Older Americans Act Title III-E National Family Caregiver Support Program (NFCSP), and released the Process Evaluation Report in 2016 and the Outcome Evaluation Report in 2018.
ACL is now releasing a supplementary report based on a small, retrospective study of caregivers in the Outcome Evaluation: From Caregiver to Caregiver: The Wisdom and Insights of Former NFCSP Caregivers. The small group of caregivers in this retrospective study experienced a change in their caregiving experience during the evaluation because their care recipient passed away.
The report highlights caregivers’ experiences in providing care and accessing services, and it provides “advice from caregivers to caregivers.” A fact sheet is also available that summarizes key themes and insights from this group of caregivers.
SeaWorld in Orlando has put staff through training and added more resources for visitors to become an official certified autism center. Guests will be provided with specific information about attractions and experiences along with in-park accommodations to help them plan their day and make informed choices best suited to their individual needs. Visitors can also use a quiet room inside the park with adjustable lighting to take a break.
DISABILITY SCOOP: Report: Waiting Lists For Medicaid Waivers Up, Competitive Employment Down
By SD Network, 2019-01-14
According to a new report, more people are on waiting lists, fewer are competitively employed and access to services remains uneven. There are a wide range geographical disparities that exist when it comes to opportunities for people with intellectual and developmental disabilities to live and work in their communities.
ADMINISTRATION FOR COMMUNITY LIVING: Announcing the National Center on Advancing Person-Centered Practices and Systems
By SD Network, 2019-01-14
The Administration for Community Living and the Centers for Medicare & Medicaid Services announce the launch of the National Center on Advancing Person-Centered Practices and Systems (NCAPPS).
During the past 30 years, systems for people with disabilities and older adults with long-term service and support needs have generally shifted to embrace person-centered principles, premised on the belief that people should have the authority to define and pursue their own vision of a good life. Yet, the degree to which these systems have fully adopted person-centered practices varies, and many continue to grapple with how to effectively implement them.
The goal of NCAPPS is to promote systems change that makes person-centered principles not just an aspiration, but a reality in the lives of people who require services and supports across the lifespan. NCAPPS will assist states, tribes, and territories to transform their long-term care service and support systems to implement U.S. Department of Health and Human Services policy on person-centered thinking, planning, and practices. It will support a range of person-centered thinking, planning, and practices, regardless of funding source. Activities will include providing technical assistance to states, tribes, and territories; establishing communities of practice to promote best practices; hosting educational webinars; and creating a national clearinghouse of resources to support person-centered practice.
NCAPPS is funded by the Administration for Community Living and the Centers for Medicare & Medicaid Services, and administered by the Human Services Research Institute (HSRI). Engagement of people with lived experience will be at the heart of all NCAPPS activities. A Person-Centered Advisory and Leadership Group composed of national experts with lived experience receiving long-term services and supports will oversee and contribute to all aspects of NCAPPS. HSRI will be partnering with national organizations to ensure the work is relevant and effective, including:
- National Association of State Head Injury Administrators (NASHIA)
- National Association of States United for Aging and Disabilities (NASUAD)
- National Association of State Directors of Developmental Disability Services (NASDDDS)
- National Association of State Mental Health Program Directors (NASMHPD)
- National Association of County Behavioral Health and Developmental Disabilities Directors (NACBHDD)
- National Association of Medicaid Directors (NAMD)
Technical assistance applications are available now.
States, tribes, and territories can apply for technical assistance through an application available online.
The deadline for technical assistance applications is February 12, 2019. Completed applications should be submitted to NCAPPS@acl.hhs.gov.
For more information:
Additional information about NCAPPS is in this NCAPPS overview document.
Join the NCAPPS launch webinar on January 29 at 3:00 - 4:30 pm EST to learn more about NCAPPS and to have your questions answered regarding technical assistance opportunities. Register for the webinar.
To learn more, contact NCAPPS@acl.hhs.gov.