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“Life isn’t fair.”  Most of us have heard that saying more than once in life.  Whether it’s your favorite team losing a game or learning devastating news about a loved one, hearing someone say “life isn’t fair” in those situations often isn’t what we like to hear.  As I’ve said in previous entries, comparing ourselves to one another is human nature.  Most times, when we compare ourselves, we are invoking pity on oneself over our circumstances.   It’s during these times that life truly doesn’t seem fair.  For people with disabilities and health conditions, self pity is something we vastly try to avoid, but, sometimes, at least for myself, I can’t.

I admit, the last few months have been pretty rough.  Many issues relating to having a disability have surfaced, and I’ve been faced with a dose of reality.  My care situation continues to be an unbelievable struggle.  I had four people quit in one week.  Two of the people were brand-new hires and didn’t show up for training on multiple occasions.  I try to give people a few chances, but, when it comes down to it, I need responsible people because I literally depend on them to live.  Due to these people quitting, I’m left with a ton of open shifts.  Thank goodness my parents are retired because they’ve been my savior.  I’ve had to go to their house for a few days and they’ve also come up here (it’s about a half hour drive) multiple days per week to help me.  I also often go without a lunch shift (which includes using the restroom).  This situation isn’t at all what I want.  I absolutely hate relying on my parents.  I’m burdening them and their plans.  They, of course say, it’s ok, but it’s not!  People tell me that I can’t take it personally when people no show or quit, but it’s almost impossible not to under these circumstances.

Due to these care issues, discussions about my future have started.  Quite frankly, it’s pretty depressing.   I’m a very realistic person, but I guess I’m also a dreamer.  While I know that we need to come up with a better plan or solution, in the back of my mind, I ponder what if I could meet that special person who I could spend the rest of my life with.  Everything from around the clock care, to group homes, to assisted living have been brought up.  I understand these are the realistic options for my situation, but, honestly, it breaks my heart that we have to even discuss these options for me.  Boastfully, I take a lot of pride in the independence I do have.  Even though, deep down I understand assisted living or a nursing home will probably be reality for me at some point down the road, I’m only 33 years old.  I don’t want that for myself.  Selfishly, I think I deserve better.

Though definitely most prevalent, cares aren’t the only issues I’ve had.  Earlier this summer, I saw a gastrointestinal specialist to see if there was anything that could be done to prevent more stomach issues.  I guess I was hoping for some magical solution; instead, I was basically told nothing could be done and to probably expect more problems.  Unfortunately, due to cerebral palsy, it’s just the way my body is.  Additionally, I had been dealing with another medical issue for over six months; I finally saw a specialist for it last month and learned, though it can improve with treatment, it’ll likely never completely go away because of my condition.  Thankfully, it’s very minor and something I can easily live with, but it’s just one more thing to deal with.

Additionally, I’ve been dealing with some social issues due to my physical limitations as well.  People make plans and try to include everybody, but don’t realize that the plans aren’t realistic for a person in with my circumstances.  While I know people never mean to exclude me, it’s very frustrating when I’m not able to participate in things due to my physical limitations.  Usually I’m pretty good at seeing happiness through other people’s eyes, but, in some situations, it’s almost impossible to do.  There are just some things that I desperately wish I could do, and when people I love get to do them, sometimes, it’s just hard. 

 How do I deal with self-pity and disappointment?  Unlike most people my age, I don’t have a significant other to vent to or to comfort me.  This often poses a problem because often, besides a few close family members and friends, the only other outlet I have is social media.  I often irrationally post something on Facebook out of frustration.  Far too many times I’ve heard it from my mom because family members have called her asking what’s wrong with me.   I’ve gotten better at refraining from posting, but, admittedly, I’m not perfect.  Putting my feelings on Facebook allows me to talk with friends who have similar situations.  Depending on what the situation is, I often just message people now instead of posting.

Do I want pity?  Absolutely not!  I certainly admit, though, there have been far too many times lately when I felt hopeless and sorry for myself.  It really does no good, but it’s human nature to.  It’s during those difficult times that I rely on my wonderful family and friends to help me through.  I also think people with disabilities have a stubborn side to them, and, often, I think that’s what helps us persevere through the challenges life throws at us! 

***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.

Thanks to a high school history class studying history of disability, a student beliieves that there needs to a National Museum of Disability.    He points out that almost all other minorities have a national museum.  The museum would be a hub of information for, by and about people with disabilities.  It'd bring aspects of disability together and allow visitors to understand what it means to be part of the disability community.  

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Circles of Life Conference 2019
35^th Annual Statewide Conference: May 2 – 3, 2019
Holiday Inn – Convention Center, Stevens Point, Wisconsin
 

The Circles of Life Conference invites you to submit a proposal (or two) for the 2019 conference. Between 400-500 individuals with disabilities, their families and professionals from across Wisconsin attend the Circles of Life Conference each year. The conference is a unique opportunity for participants to develop new skills, learn up to date information and form lasting relationships.
 
We are looking for presenters including: parents, family members, youth and adults with disabilities, professionals, providers, volunteers, or other potential presenters with information or expertise in a broad range of topics that affect families and individuals with disabilities.  Previous topics have included:

• Leadership and advocacy
• Community
• Education
• Family and self-care and wellness
• Health and mental health topics
• Long-term care
• Transition
• And many others…

We hope that you will consider submitting a proposal for the 2019 conference or share this information with other individuals who you think would be excellent presenters.
 
Please visit the Circles of Life website at circlesoflifeconference.com/call-for-presenters/ for application materials. The deadline for proposals is September 30, 2018.
 
For more information, please visit the Circles of Life Conference web site at:circlesoflifeconference.com or find us on Facebook.

People with disabilities can acquire new skills and decision-making capacity throughout their lives. Ensuring more people with I/DD retain their rights to make decisions and have the support they need to make choices in their lives is one of seven priority issues BPDD focuses on in our 2019-21 state budget and policy platform.

Recommendations include:

• creating a time-limited guardianship option for young people with disabilities that gives young people the time needed for their brains to fully mature, gain life experience, and practice with decision-making, and offers an opportunity to re-assess competency
• ensuring guardians receive training on the roles, responsibilities, and duties required of guardians under Wisconsin’s law

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People with disabilities may rely on multiple public benefit programs—including Medicaid, FoodShare, public housing, and Social Security Income or Disability Insurance—to access the health care, food, housing, and funding they need to live independently and stay out of institutions. There is no tiered path across public assistance programs for people with disabilities to gradually increase their income and assets while maintaining access to some or all supports across public benefit programs. Improving people with disabilities access to public benefit programs as they move towards life goals is one of seven priority issues BPDD focuses on in our 2019-21 state budget and policy platform.

50% of people with disabilities in Wisconsin rely on all of Wisconsin’s 20 Medicaid programs. Medicaid provides services and supports that are not available or are not available at the level needed on the private insurance market and keeps people with disabilities living in their homes and out of costly facilities like nursing homes. Improving Wisconsin’s Medicaid programs is one of seven priority issues BPDD focuses on in our 2019-21 state budget and policy platform.

Recommendations include:

• Creating a Medicaid waiver to provide a limited package of services to keep low-income people who make more than $12,000 per year independent and in their homes
• providing funding for continuous outcome improvement initiatives that improve community employment, transportation, and community living for people with disabilities
• transitioning the remaining residents of state institutions in to Family Care/IRIS
• improving access and navigation for families of the Children’s long-term support waiver program

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Poor educational preparation of students with disabilities translates into a lifetime of high unemployment, lower wages, and greater reliance on public benefit programs. Improving educational outcomes for students with disabilities is one of seven priority issues BPDD focuses on in our 2019-21 state budget and policy platform.

Recommendations include:

• increasing funding for special education
• improving school accountability to make sure all schools report similar data and parents have an apple to apples comparison between education options

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Wisconsin’s bi-partisan Employment First legislation recognizes community integrated employment as a priority for people with disabilities. Wisconsin families want more competitive integrated employment choices; increasing the number of people with disabilities working in the community is one of seven priority issues BPDD focuses on in our 2019-21 state budget and policy platform.

Recommendations include:

• creating a one-time grant program to help long-term care employment service providers change their policies, practices, and business models to increase the number of individuals transitioning into sustained competitive-wage community jobs
• creating individual independence accounts that provides matching dollars for youth to finance work-related expenses
• making sure people with I/DD who do not meet the nursing home level of care have access to employment supports

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People with disabilities are not able to get where they need to go on their schedule. Access to Transportation is consistently the top concern for people with disabilities in Wisconsin, and it is one of seven priority issues BPDD focuses on in our 2019-21 state budget and policy platform.

Recommendations include:

• making sure that enough transportation is included for people with disabilities in Family Care and IRIS who are working or who want to work in the community
• reforming the Non-Emergency Medicaid Transportation (NEMT) service so people get the rides they need for medical appointments
• incentivizing a regional approach to transportation to maintain and expand public transportation capacity and make sure that people can get where they need to go on their schedules no matter where they live

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In Wisconsin a shortage of professional direct care workers has created a crisis for people with disabilities, older adults, and their families. Improving worker retention and increasing the number of workers is one of seven priority issues BPDD focuses on in our 2019-21 state budget and policy platform.

Recommendations include:

• creating a Medicaid Buy-In program for direct care workers so they can work more and keep their access to health care
• making sure worker wages in border areas match pay in other states so Wisconsin workers work for Wisconsin citizens
• supporting increases in wages, coverage of transportation costs, paid time off and retirement savings plans, and training or career advancement opportunities that retain and attract quality workers into the field
  

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