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As the saying goes, “family is forever.”  Every single human being on Earth has some sort of a family.  Obviously, there are several different kinds of families.  Whether it’s blood relatives, a church family, a family of friends, or another combination of people, families are what get us through life.  Family members celebrate the good times together and are there to embrace one another during the difficult times in life.  In past entries, I’ve discussed how my disability affects my immediate family (my mom, dad, and sister).  I’ve also shared about how I’ve been blessed with an amazing group of friends who accept and embrace my unique circumstances, but my disability also affects another group of people who I dearly love.  My extended family—my grandparents, aunts, uncles, and cousins.

My mom and dad each happen to be the oldest of four children in their families.  They were the first to get married, and they were the first to have a child.  My grandparents were filled with excitement with the expecting of the first grandchild.  My aunts and uncles were eager to meet their first niece or nephew.  As I’ve shared in previous entries, my mom had a completely normal pregnancy and I was born on my due date.  The complications happened during the last few minutes of delivery.  I can’t even fathom what it was like for my grandparents, aunts, and uncles to get that call saying that there were complications and it was unclear if I’d survive.  What an awful phone call to get—especially when they were anticipating joyous news.  In the days following my birth, my grandparents and some of my aunts and uncles came with my parents to see me in Neonatial Intensive Care Unit (NICU).  Visiting the NICU isn’t a walk in the park.  It’s a frightening place.  Even though medical professionals assured my parents that it was a fluke mishap, my traumatic birth put a scare into the entire family—especially since some of my uncles and aunts were planning to have children soon after.  Thankfully, the initial shock did wear off, and it was realized that it wasn’t anything genetic.

During the first few years, my grandparents, aunts, and uncles did whatever they could to help.  My grandparents and aunts and uncles who were in the area learned how to take care of me.  It’s not uncommon for grandparents or aunts and uncles to babysit, but my relatives had some additional responsibilities when they watched me.  That didn’t stop them though; they were always more than willing to take me for a night or weekend so that my parents could enjoy some time out.  I had one set of grandparents who lived very nearby.  Some of my best memories from my childhood are when my grandma took me to physical therapy in Oshkosh on Friday mornings (because I didn’t have Early Childhood that day) and then I’d spend the day with her and grandpa.  It wasn’t what grandparents did with “typical” grandchildren, but that didn’t matter to them; they wanted to spend time with me.

My first cousin was born when I was two or three years old.  Relief came in the family when she was perfectly healthy.  My parents were overjoyed to have their first niece; however, I think at times it was hard for them to see her meet the normal milestones like walking and talking because I hadn’t done those things and they knew I’d likely never would.  My mom has told me she remembers having to explain to me why my cousin was able to walk and talk, but I wasn’t.  I can’t imagine how hard that must have been, but I know she did it in a positive way. 

My sister and many more cousins came in the following years.  It has never been discussed in front of me, but I’m sure my aunts and uncles had to have conversations with their children about my disability.  I’m sure that they made it clear to their kids should greet and hug me (we’re a hugging type family) when they first see me.  I’m sure they were told to try to include me in everything too.  Having to explain my disability to my cousins couldn’t have been easy for my uncles and aunts—especially since there’s quite an age range among it my cousins.  Like most little kids, many of my cousins went through a stage where they were scared of me because I was visibly different, but my aunts and uncles did their best to try to encourage interaction with me.  I’m sure my cousins asked lots of questions after seeing especially when they were really young, and I can only assume that my aunts and uncles did their best to answer them. 

My grandparents and relatives continue to help as I get older.   When I went to school at UW-Whitewater, I was fortunate to have my other grandparents and an uncle and aunt close by.  My grandparents came up every week to do my laundry for me.  It was very nice to see them so often.  It also gave my parents piece of mind that if I ever had an emergency, people were close.  When I’ve had medical issues the past few years, my grandparents, uncles, aunts, and cousins have been always right there to offer support in any way they can.  I also think they realize that seemingly minuscule achievements for most are often huge accomplishments (graduating college, moving into an apartment, getting a job, etc…) for me; they understand we celebrate the small victories in my life.

As my cousins have grown up, they have gotten better about interacting with me.  Obviously, like in all families, some cousins are closer than others.  Overall, though, in recent years, I’ve noticed that many of my cousins are taking time to interact with me without being prompted to.  I can’t tell you what an awesome feeling that is.  I’m well aware that it takes some extra effort and patience to have a conversation with me.  It’s to the point where many of my cousins are dating, getting married, and having babies.  I know that my aunts, uncles and now cousins probably have to explain my circumstances to their significant others and children. Again, I know that it can’t be an easy conversation to have, but they do it because they want them to feel comfortable around me.

Having somebody who has a significant disability in a family has its challenges.  Extended family has a choice whether or not to accept the circumstances the person has.  I’m beyond blessed to have an incredible extended family who not only accepts, but embraces the person I am.  For that, I’m forever grateful! 

***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.

The Justice Department issued guidance earlier this year to facilitate compliance with the Americans with Disabilities Act (ADA) during interactions criminal justice entities have with individuals with mental health, intellectual, or developmental disabilities. The document sets forth the key regulatory provisions under the ADA and also provides recommendations for anticipating and preparing for disability-related needs of individuals. Recommendations include training criminal justice personnel, conducting reviews of policies and procedures, and collaborating with mental health and disability service providers.

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A new report reveals that direct care workers can't afford to stay in their jobs.  The average home care worker makes $10.49 an hour, but due to varying hours, people typically don't make enough to live on.  The report states that most home care workers live below the poverty line.

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It's estimated that people who receive Social Security could see a 1.8% increase in 2018.  This is based on an annual cost of living adjustment.  The cost of living adjustment is based on consumer price index data.  The article explains that estimating the cost of living adjustment has been more challenging this year due to the impact of the major hurricanes.

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The Americans with Disabilities Act covers many aspects of disability rights that affect the everyday lives of people with disabilities. One major element of the ADA is its regulations regarding sidewalks. A new paper, written by faculty and students at Syracuse University College of Law, presents the historical and modern state of the ADA's legal influence on sidewalks and answers important legal questions about the duties of local communities and governments under the ADA.

The paper examines several topics, including how different laws define "sidewalk," when performing sidewalk repairs will bring older sidewalks under the scope of the ADA, and how snow removal can affect accessibility. It also offers a summary of the currently available resources for businesses and governments to use in planning for accessible sidewalks.

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According to a new national report, Wisconsin is expected to need an additional 20,000 home care workers  by 2024.  It's widely known that there is already a serve shortage of care workers in the state.  Many blame low wages and poor working conditions for this.  A 4% increase for Medicaid reimbursement for personal care workers was approved in the recent state budget, but many  felt a 15% increase is needed to do  any good.

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In 2017, the National Association of States United for Aging Disabilities administered a survey of state agencies that deliver Long Term Services and Supports, including aging and disability agencies as well as Medicaid programs, regarding the significant policy, fiscal, and operational issues occurring within each state. During the survey, they collected detailed information about the structure of agencies, the supports provided, and the populations served by state programs.

View results

A first of its kind digital hub is designed to address needs of over 1 billion people facing disability, digital literacy or aging related barriers.  The unique online digital hub was launched in 2017 at a conference  in the UK.  It provides the resources needed to learn about, create, improve and market accessible products.  

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Google is looking to the public in an effort to make navigating the world easier for people with disabilities.  They're asking users to add information about wheelchair accessibility to entries on Google Maps. Wheelchair accessibility was added to Google Maps last year, and now they're making a push to add more accessibility attributes to the map.

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The American Association on Health and Disability (www.aahd.us) is accepting applications for the Frederick J. Krause Scholarship for undergraduate (junior/senior status) and graduate students with disabilities who are majoring in a field related to disability and health.  Please feel free to distribute to your colleagues.

SCHOLARSHIP PROGRAM CRITERIA: The AAHD Frederick J. Krause Scholarship on Health and Disability is awarded annually to deserving students with a disability,pursuing undergraduate/graduate studies (must be at least enrolled as a Junior in college) in an accredited college or university. Preference is given to students majoring in a field related to disability and health, to include, but not limited to  public health, health promotion, disability studies, disability research, rehabilitation engineering, audiology, disability policy, special education and majors that will impact quality of life of persons with disabilities.

Applicant must have a disability Applicant must be enrolled  FULL TIME as an undergraduate student (junior standing and above) or enrolled PART TIME or FULL TIME in a graduate school Preference is given to students majoring in a field related to disability and health (see Scholarship  Program Criteria above) Applicant must be a US citizen or legal resident living in the US and enrolled in an accredited United States university Funds are limited to under $1,000

FUNDING INFORMATION: Funds are limited to under $1,000. The AAHD Board of Directors Scholarship Committee will evaluate each of the applicants and make a decision in December of each calendar year.  The 2017-2018 Scholarship Award will be awarded January 2018.  It is the discretion of the Scholarship Committee to determine how many scholarships will be awarded each year and the amount of each scholarship. 

APPLICATION REQUIREMENTS: 

• Applicant must provide a Personal Statement (maximum 3 pages, double spaced), including brief personal history, educational/career goals, extra-curricular activities, and reasons why they should be selected by the AAHD Scholarship Committee. This statement must be written solely by the applicant
   
  
• Applicant must provide two (2) Letters of Recommendation (One must be from a teacher or academic advisor). Letters may be sent by U. S. mail or by email attachment as pdf and should include the signature of the teacher or advisor, and the name of student should appear in the subject line of the email.
   
  
• Applicant must provide an official copy of college transcript, which should be mailed to AAHD in a sealed envelope.
   
  
• Applicant must agree to allow AAHD to use their name, picture and/or story in future scholarship materials.

Applications are due November 15, 2017.

APPLICATION FORM: PDF
Please attach your application, supporting materials, etc. and email to: scholarship@aahd.us. Place “2017-18 Scholarship” in subject line. (Please use MS Word for your personal statement and MS Word, if at all possible, and/or PDF for all other documents that are emailed as attachments).  If this is not possible, please mail documents to:

Scholarship Committee
American Association on Health and Disability
110 N. Washington Street, Suite 328-J
Rockville, MD 20850

Only completed applications will be considered and must be postmarked and/or received by email no later than November 15, 2017.