News

As the saying goes, “if it works, don’t fix it.”   In today’s world, where it often seems like we’re trying to improve everything for one reason or another, that saying is frequently forgotten or ignored.  While it’s human nature for people to want to make things better, sometimes people forget to consider the repercussions of changing things will have on others.  Change is hard for everyone.  Due to a variety of reasons, people with disabilities often struggle with change.  Whether it be a change in a material good or a change in an essential service, changes affect all of us.

I’m the first to admit that I don’t do well with change.  I’m convinced a big reason for this is because I live such a scheduled life.  As I’ve shared in a previous entry, due to having drop-in cares, my whole day is scheduled—everything from the time I get up in the morning, to the times I use the restroom and eat meals, to the time I go to bed at night, everything has a set time.  When I’m out of my routine, my body often starts to react in weird ways.

Changes in material goods often have mixed effects on people with disabilities too.  Many times, when material things are improved or upgraded, it often makes life easier for everyone.  However, sometimes when things changed, people don’t realize how it will affect others.  Recently, I read an article online about how the United Kingdom is trying to ban disposable plastic straws because they’re not environmentally friendly.  The article explained why this wouldn’t be good for people with disabilities.  To the average person, this probably doesn’t make a lot of sense.  Why wouldn’t banning plastic straws have such a negative impact on people with disabilities?  For me, personally, being able to drink from a straw “independently” didn’t come easy.  For many years, I either had to drink directly from a cup (someone had to pour liquid directly into my mouth) or someone had to literally hold my lips closed on a straw so I could suck the liquid up.  I think it was nearly college before I was able to use a plastic bendable straw by myself (meaning I’m able to suck liquid through a straw without somebody having to hold my lips shut).  It’s much more socially appropriate to independently drink from a straw than to have somebody pour liquid into your mouth or having someone hold your lips shut on a straw.  Having said that, most hard reusable straws aren't feasible for me (I don't have the ability to get enough suction to get the liquid up with hard straws). Lots of hard straws aren’t bendable either which poses another problem.  Some people, like myself, have a hard time positioning himself/herself to access a regular stick straw; bendable disposable plastic straws are often easier to get at.  Paper straws often aren’t a realistic option for some people with disabilities either.  In my case, because of the way I latch onto the straw, I’d ruin a paper straw even being able to try to suck on it.  Many of my friends with cp have the same issues with straws.  While I’m all for being environmentally friendly, I’m not sure eliminating disposable plastic straws would do much good.

Advancements in technology have made a huge positive impact on lives of people with disabilities.  However, advancements sometimes bring on more challenges that people don’t often think about.  For example, flat screen TVs have become the norm.  While they save a lot of space and are neat, the one thing they normally don’t have are controls on the front of the TV.  Most people wouldn’t even think about this; however, for me, having to use a remote to control the TV presents some challenges.  Due to my fine motor limitations, I can’t just grab the remote and press a button to turn TV on.  In order for me to work a TV remote, it has to be on a hard surface (like a table) and aimed at the TV.  Depending on the setup, the remote often has to be velcroed to the table so it doesn’t fall off when I try to hit the buttons.  Before when buttons were on front of TVs, I could just press them on the TV itself.  Another example of how technological improvements have made some additional hurdles for me is with the adaptive keyboard I use.  Since I was really young, I’ve used enlarged keyboards with mouse functions built-in (meaning I control the mouse by pressing buttons on the keyboard).  I’ve used the same brand of keyboard for over 15 years.  These keyboards wear out because of just over usage.  A few years ago, it was time to get a new computer and It was then I realized that the keyboard I’ve been using hard been discontinued.  I had an assistive tech evaluation done to see if there was anything similar out there.  Unfortunately, to my surprise, there isn’t another enlarged keyboard that has a built-in mouse on the market.  Luckily, the discontinued keyboard still works computers with newer operating systems, so we bought quite a few used keyboards off eBay.  I’ll use those until another keyboard with a built-in mouse is developed.  I can only guess that the keyboard was discontinued due to more advanced products being developed; however, before something is discontinued, there should be something similar made to replace it.

Some home products are often adapted to be made “handicapped accessible.”  Most of the time, these accessible products make life easier for people with disabilities.  There have been times, however, where I’ve found it’s actually more difficult to use adapted products.  One example that comes to mind is when the housing authority tried installing a high-rise toilet in the bathroom in my apartment.  While I can normally use high-rise toilets, because of the way my bathroom is setup, I would have had a much harder time using a high-rise toilet.  Fortunately, the housing authority eventually listened to me and let me keep the regular toilet.  That’s just one example of where an adapted product didn’t work in my favor.

People say change is good, and I agree most of the time that it is.  However, sometimes with all repercussions of the change, it can do more harm than good.  We, as a society, just have to remember to consider how it will affect everybody involved when making a change! 

***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 Centers for Medicare & Medicaid Services (CMS) is requesting input to help develop a potential mode for direct provider contracting.

A direct provider contract model would allow providers to take further accountability for the cost and quality of a designated population in order to achieve better beneficiary outcomes. Such a model would have the potential to enhance the doctor-patient relationship by eliminating administrative burden for clinicians and providing increased flexibility to give the high-quality care that is most appropriate for their patients, thus improving quality while reducing expenditures.

Please submit comments to the CMS Innovation Center at DPC@cms.hhs.gov by 11:59 pm EDT, May 25, 2018.

View more details about this request for information.

Last month, AARP released its Long-Term Services & Supports State Scorecard, and Wisconsin has made the grade! The report explores how beneficial it is for people to self-direct their long-term supports, and highlights Wisconsin and the IRIS program as one of the leaders in self-direction!

Learn more

The U.S. Department of Housing and Urban Development (HUD) has announced a notice of funding availability for Mainstream (Section 811) Vouchers. HUD will award up to $100 million in funding to public housing agencies, with remaining funding reserved for future awards.

This opportunity provides funding to assist non-elderly people with disabilities who are:

• Transitioning from institutional or other segregated settings to community living;
• At serious risk of institutionalization;
• Homeless; or
• At risk of becoming homeless.

Applications for this funding opportunity will be reviewed for capacity and experience; leveraging resources; and achieving results and program evaluation. This opportunity is reserved for public housing agencies. Extra points will be rewarded to applying agencies that partner with health and human services agencies and community-based disability organizations.

Vouchers must be used to assist non-elderly people with disabilities (ages 18 up to 62) and their families. The eligible household member does not have to be head of the household. Eligibility is determined at the time the voucher is first issued.

This funding opportunity advances community living for people with disabilities. It also encourages partnerships with health and human service agencies and community-based organizations with a demonstrated capacity to coordinate services and supports that enable people with disabilities to live independently in the community.

Applications for this funding opportunity are due by 11:59 PM ET on June 18, 2018. View the details and application instructions.

Learn more about the HUD Housing Choice Voucher Program. Email mainstreamvouchers@hud.gov with questions.

Thanks to a new law, people who handle Social security payments for those with disabilities will be more closely monitored.  The Strengthening Protections for Social Security Beneficiaries Act of 2018 imposes more oversight on representative payees who manage Social Security and Supplemental Security Income for those who need assistance.  The law prevents certain type of criminal backgrounds from being representative payees and it also prevents people who have a payee themselves from being able to be a representative for others.

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 Self-Determination Network News:

April 2018

Connect | Share | Learn | http://sdnetworkwi.org/  

Join the Discussion!

The Self-Determination Network posts a discussion question related to self-determination/self-direction every month in hopes that we can share experiences and learn from each other.  Last month, we had to great discussion about housing for people with disabilities.  

This month, we're discussing yet another major challenge for people with disabilities--employment.   What are  some interesting stories of people getting community jobs they like by using self-direction strategies? Join the Discussion!

Seeking Nominations for 2018 Empowerment Awards!

Do you know of an exciting Wisconsin agency, organization, program, practice or service that helps older people increase their independence or their control over their lives or services? InControl Wisconsin is seeking nominations for the 2018 Empowerment Awards! See this flyer for more information.  Nominations, which can be made by filling out this online form, are due May 15th.  Nominate someone today!

 Stacy’s Journal

People try to stay healthy by doing things such as eating right and exercising, but, unless something feels wrong with our bodies, we normally don’t think about what could go wrong or what we would want done if something catastrophic were to happen.  In April's journal entry, Stacy discusses how secondary effects of her disability have impacted her life and have made her have to make some tough decisions. We encourage you to share your thoughts and experiences as well.

Take five minutes to check out what's happening on the Self-Determination Network:

• Airline Training:  In recent months, many airlines have been under heat for how employees treatment people with disabilities.  Find out which airline is training its employees to better understand the needs of people with disabilities.
• Doctors Focusing on Disabilities:  A new program is making sure new doctors are much more prepared to treat people with intellectual and  developmental disabilities.  Read about this unique program.
• Updated ABLE Guidance:  Recently, the Social Security Administration (SSA) published an updated version of its Program Operations Manual System (POMS) regarding the ABLE Act and ABLE accounts. Learn what the guidance is about.
• Grant Opportunities: Two new grant opportunities from the National Institute on Disability, Independent Living, and Rehabilitation Research have been announced: the Disability and Rehabilitation Research Project (DRRP) on exercise interventions for people with disabilities, and the Rehabilitation Research and Training Center (RRTC) on health & function for people with intellectual and developmental disabilities.  Learn about these grants and apply today! 
• Accessible Routes:  Google  Maps has a new accessibility feature that makes it easier for people with disabilities to get around.  Read about how the "wheelchair route" feature works.
• Guardianship Alternatives:  Recently, the National Council on Disability released a report that explains  that guardianship is commonly seen as a “benevolent measure” and imposed based upon assumptions about the capabilities of people with disabilities without appropriate reason.  Find out what steps the report recommends the government take to solve this.
• Disability Emojis:  New emojis representing various disabilities will soon be released.  Learn what the new emojis will include.
• Twitter Adds Reporting Option:  Twitter recently added "disability” to a list of protected groups on its abuse and harassment reporting page.  Find out what this is in response to.
• Ridesharing Lawsuit:  Another lawsuit against a ridesharing company was filed for violations of accessibility laws.  Read about how this suit doesn't ask for money damages, but rather accessibility through the company.

 Upcoming Events                                    

Here's a sample of upcoming events listed on the Self-Determination Network:

• WI FACETS Self-Advocacy Workshop: Self-Advocacy Spotlight:  April 24th, 6p.m. to 8p.m., WI FACETS, Milwaukee WI
• WEBINAR: Social Security’s Updated ABLE Guidance - A Deeper Dive:  April 26th, 1p.m. to 2:30p.m., Online
• TIG Summit: Supporting Youth With Mental Health Needs In Transition Planning:  May 8th, Crowne Plaza Hotel and Conference Center, Madison WI 
• 2018 Employment First Conference:  May 22nd, Kalahari Resort, Wisconsin Dells WI
• 2018 Aging Empowerment Conference: June 14th-15th, Crowne Plaza Hotel and Conference Center, Madison WI

Post your event on the Self-Determination Network and it can be included in future Network News emails to members! Questions? Suggestions?  Contact Stacy Ellingen. 

The Self-Determination Network is powered by InControl Wisconsin and supported financially by our members and Sponsors. We couldn't keep this Network going with you!  Find out how you can help support the Network.

A new funding opportunity from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) at ACL has been announced for an Rehabilitation Research and Training Center (RRTC) on community living and participation for people with intellectual and developmental disabilities.

The purpose of the RRTC program, which are funded through the Disability and Rehabilitation Research Projects and Centers Program, is to achieve the goals of, and improve the effectiveness of, services authorized under the Rehabilitation Act through well-designed research, training, technical assistance, and dissemination activities in important topic areas as specified by NIDILRR. These activities are designed to benefit rehabilitation service providers, individuals with disabilities, family members, and other stakeholders.

The purpose of this particular RRTC is to conduct research, training, and related activities to contribute to optimal community living and participation outcomes of people with intellectual and developmental disabilities. View more details and application directions.

Please visit the link above for more details about the grant opportunity and application process. This grant opportunity closes on June 4, 2018.

To stay current on NIDILRR grant opportunities, please visit www.grants.gov and search: NIDILRR or 93.433.

Within ACL, NIDILRR works to generate new knowledge and promote its effective use to improve the abilities of individuals with disabilities to perform activities of their choice in the community; and to expand society's capacity to provide full opportunities and accommodations for people with disabilities. NIDILRR conducts its work through grants that support research and development.

Unless a problem presents itself, most people don’t think about their medical well-being on a regular basis.  Sure, people try to stay healthy by doing things such as eating right and exercising, but, unless something feels wrong with our bodies, we normally don’t think about what could go wrong or what we would want done if something catastrophic were to happen.  People with disabilities are no different.  Granted, we often have some extra baggage to deal with (cares, medications, accommodations, etc…), but most of the time, those things become second nature to us—we don’t even think about it

Some disabilities and health conditions are progressive which means the symptoms of the condition get worse as time passes and the effects are eventually terminal.  Fortunately, cerebral palsy isn’t considered to be progressive.  I’ve read in multiple articles that the average life expectancy for somebody who has cerebral palsy is around 70 years old.  Although, cerebral palsy itself doesn’t get worse, people often develop secondary conditions due to cp.  Research also points out that treatments used to help people who have cp sometimes can take a toll on the body eventually leading to premature death.

A few years ago, I wrote about how I was learning to navigate my way through the health care system.  In that entry, I shared a little bit about how I had started having some health issues.  In summer of 2012, I had a Baclofen pump surgically inserted which helps relax my muscles.  Three weeks after that surgery, I had major emergency gastrointestinal surgery.  Since then, I’ve had ongoing issues.  I had another surgery in 2014 and have had a few hospital stays since.  About three weeks ago, I had another emergency surgery and spent a few nights in the hospital.  I had yet another gastrointestinal issue.  Due to my past surgeries and the effects of cp, we found out that I’m unfortunately prone to having more of these types of issues and there really isn’t anything I can do to prevent it.

It’s often said that there isn’t enough focus on treating adults who have cerebral palsy.  There is quite a bit of information about treatments and research to help children with cp, but there’s not much out there for adults.  I’ve had many conversations with friends who also have cp, and many of them feel the same way—although we know cp isn’t progressive, we feel the effects of it impacting our lives more as we get older.  I haven’t done much research lately, but I haven’t seen anything recent on how cp effects the aging process.  It’d be interesting to see studies done on that. 

Like everybody else, each time I go in for surgery, I have to answer those dreaded questions.  What measures do you want taken to keep you alive?  Do you want to be on life support?  Questions such as those aren’t the easiest to answer especially when you’re headed into emergency surgery.  I understand why the questions need to be asked, but, regardless of the situation, they are never easy to answer.

Often times, people, especially those with disabilities and health conditions, are encouraged to have a Power of Attorney of Healthcare on record at the medical facilities they use.  The purpose of the medical POA is to give health care professionals guidance as to your wishes in case you’re ever in a medical condition where you’re incapable of making those decisions yourself.  You can designate two or three people who you would want to make decisions for you and on the form you can answer specific questions about your preferences for sustainability.  People should have the medical POA on record, but a licensed doctor must “activate” it if a situation arose.  Ashamedly, I admit, I have yet to get mine on record.  Every year, during one of my screenings for IRIS, I’m asked if I have one on record.  I’ve had the paperwork printed out for three or four years.  It’s just a matter of filling it out, getting signatures, and sending it to my medical providers.  What’s the hold up, you ask?  Well, aside from finding witnesses (they can’t be family members) to sign it, there’s a psychological aspect to it.  It’s obviously a sensitive issue to begin with, but, for me, it brings up another issue.  For most people my age, their next of kin or their designated person would be their significant other.  Thankfully, I have great family who have agreed to be my designated people, but there’s something about putting it on record that just makes me feel hurt.  I know I need to get it done though.

When I was young, I had no idea secondary health issues were common among people who have cp.  Dealing with health issues definitely isn’t fun, but it’s part of my life and something I’ve learned to deal with.  Having to make tough decisions about “what if” situations isn’t easy either, but I guess that’s called being an adult.  While, at times it isn’t easy to do, I try not to let my issues get in the way and live life to the fullest.  That’s all we can do, right?

***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.

A lawsuit is accusing the U.S. Department of Justice of acting illegally when it withdrew more than two-dozen guidance documents late last year, including several clarifying the ADA. The guidance documents describe the government’s interpretation of federal laws, providing information that can be important to state and local agencies, employers and recipients of federal funds. According  to the lawsuit, the guideline helped people with disabilities “move away from ‘sheltered workshops,’ where they are often paid much less than the minimum wage and are vulnerable to exploitation and abuse”.

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Advocates filed suit against Lyft, a ridesharing technology company, for violations of the Unruh Civil Rights Act and California Disabled Persons Act. The class-action suit claims that Lyft does not operate enough wheelchair accessible cars. Lyft has a service called Access designed for customers with disabilities. However, the lawsuit alleges that this service is a sham, and calls it an "inadequate substitute for actual accessible transportation."  When requesting a car in Access mode, Lyft only promises access for foldable wheelchairs and service animals. For people who need a ramp or motorized lift, the app sends a text message that links to a website listing phone numbers for other transit companies that may be able to provide accessible transportation.  The suit does not ask for money damages, but instead only for accessibility through Lyft.

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