,I love swimming. It's the one form of exercise where I feel completely free! The pool is the one place where I can stand without mobility aids. In aides and for the most part I can be pretty much pain free!
Yes there is that pesky problem of needing an attendant to assist with undressing and redressing and yes it's very frustrating when I have planned to go swimming and my attendant cancels on the day that we have scheduled. But even though this occasionally happens, I still love going swimming.
I believe that any form of movement no matter how big or small does a person with a disability well.
When I enter a pool I generally move my legs and walk around for a bit. This helps me get used to the temperature of the water and I enjoy how my legs feel with the ability to walk in the pool.
When I'm ready to start swimming I like to perform the backstroke. This stroke allows me to breathe without having to worry about getting water in my mouth, usually. However there are some exceptions to this especially when the pool ends to get crowded. (However I try to avoid swimming at peak hours as much as possible.)
I love swimming laps. I find that laps allow me a good physical and cardiovascular workout as well.
However, thing that is often frightened me is swimming on my stomach. This makes me feel uncomfortable because my legs tend to drop as I'm trying to swim. So I often swim in the shallow end when trying to swim on my stomach.
Recently I went to a swimming clinic for folks with spinal cord injuries. At the clinic, they showed us how several different flotation devices can help people with disabilities to swim independently.
At first I was very skeptical and hesitant to try various flotation devices. I really didn't believe they would work for me. But , sum of the devices did work for me. At the clinic I felt like a little kid who has learned to swim for the first time. The flotation devices have opened a whole new world in regards to my ability to swim.
Am I still scared to swim on my stomach. Absolutely!! But, I'm slowly working through my fears, one stroke, one lap at a time.
The Disability Integration Act (DIA), This potential disability policy, will strengthen the Olmstead Decision. Supreme Court decision was based on accommodating people with mental disabilities to live as independently as possible in the community in which they live.
The DIA a is bipartisan legislation that people with disabilities have the right to receive to live independently and receive services in there home. Senators Chuck Schumer (D -NY) and Corey Gardner (R- CO) as well as Jim Sensenbrenner (R-WI) support this potential policy.
Some key components of the act is that every person that is eligible for long-term care services has a federally protected right to live in the most integrated setting and have as much control as possible over a person's services and supports in order to live independently successfully.
The bill gives Long-Term Care Services and insurance providers the ability to deliver services to people with disabilities with broad latitude. This is done without wasteful government spending.
The bill also includes comprehensive planning that includes affordable, accessible, integrated independent of service of other services.
Electronic Visitation Verification
As I mentioned in a previous post, in December 2016, President Obama signed the 21st Century Cures Act. Establishing what is known as Electronic Visit Verification (EVV). As part of the National Fraud Prevention Program (NFPP) within the centers for Medicare and Medicaid Services (CMS). The EVV places a mandate on providers of personal care services and home health care services providers under Medicaid, including In-Home Supportive Services (IHSS) in California.
Here are some frequently asked questions regarding Electronic Visit Verification:
Q: What Is Electronic Visit Verification (EVV)
A: EVV is an electronic system that requires providers of personal care services, such as IHSS, to confirm that services were delivered. Providers can verify the services they are provided to consumers through a variety of electronic methods. Such as a phone call or electronic signature.
EVV is used to verify the following information:
1) The date of service.
2) The time service starts and ends
3) The location of the service.
4) The individual providing the service.
5) The type of service being provided.
6) The individual receiving service.
Q: Which providers will need to use EVV?
A: Beginning January 1, 2020, all personal-care service providers including IHSS providers are required to comply with the law.
Starting January 1, 2023 home healthcare service providers under Medi-Cal in California will be required to use EVV.
Q: Will the California program of EVV use real-time GPS tracking?
A: No. Recipients and providers will have the option to fill out an electronic timesheet a telephonic option every two weeks.
Q: What is the difference between Electronic Timesheets and Electronic Visit Verification?
A: The California Department of Social Services (CDSS) allows IHSS providers in California the option to submit their timesheets online through the electronic timesheet website. The use of electronic timesheets is optional.
The EVV program would require providers to report the type of services that are being provided to consumers by way of electronic timesheets, electronic devices such as a telephone, or smart phone or a landline. All providers would be required to report using EVV.
Q: How will the EVV system affect the care I provide for my consumer?
A: It is unclear how EVV will impact the delivery of personal care services for consumers. Consumer advocates fear that EVV would take away their ability to self -direct how their caregivers provide services.
Q: Can consumers, attendants, and family members play a role in what the new EVV system will look like in California and other states?
A: Yes! If you are located in California, please feel free to contact the Stop EVV Coalition: email@example.com or call: (510) 686-3139.
If you are outside California, please contact:
This is just a quick post to get the word out!
Mark your Calender: On 12/11: National Disability Call in Day To Stop the #TaxOnDisability
Join people with disabilities, our families, and advocates around the country on Monday, December 11th, for a national call-in day to oppose the Tax Cuts and Jobs Act (TCJA).
The Senate and House have each passed versions of the TCJA and the bill is in a conference committee to come up with the final bill. WE STILL HAVE A CHANCE TO STOP THIS #TaxOnDisability. Senators and Representatives are feeling the heat, and we need a huge push NOW!
This bill will hurt people with disabilities.
* It dramatically cuts the revenue needed to fund Medicaid, Medicare, Social Security, housing, and other services that benefit people with disabilities.
* The over $1 trillion cut in revenue is the “pay for” for tax cuts that disproportionately benefit the wealthiest Americans and large corporations.
* Members of Congress who support this bill have already said that they next plan to make cuts to Medicaid, Medicare and other programs on which people with disabilities rely to address the increased deficit caused by this bill.
* The bill has provisions that directly hurt people with disabilities. Because this a conference on both the House and Senate bills, all harmful provisions are could be included in a final bill. The bills have provisions that eliminate tax deductions and credits that help people with disabilities pay for high medical expenses, work, access housing, and get medication.
* It repeals the Affordable Care Act’s requirement that everyone have health insurance. This will cause premiums for people with disabilities and pre-existing conditions to increase, leaving heath insurance unaffordable for millions.
Help us send a loud and clear message that this legislation is unacceptable!
Learn more here:
Call the Capitol switchboard at: 202-224-3121 (voice)
or 202-224-3091 (tty)
Use this sample script and talking points.
You can use this event page to share with friends and family not on Facebook.
How to call:
Call the main Capitol line at: (202) 224-3121 (the TTY line is 202-224-3091).
You will be sent to an automation. It will tell you to press 1 for your senators or 2 for your representative. Select an option.
Then, it will ask you to enter your zipcode. Enter your zipcode using the buttons on your phone. It will read back what you entered, and ask you to press 1 if it is correct and 2 if it is not. If it is not correct, it will ask you to enter your zipcode again.
From there, the call will go directly to your elected official’s office.
Once you have made contact with the office, you can use this script:
Hello, this is [Name]. I’m a resident of [Town, State] and [I/my child/sister/friend/co-worker etc] is a person with a disability who relies on Medicaid for health care and services to live and participate in the community.
Congress is considering tax reform legislation that primarily benefits wealthy individuals and large corporations and would increase the deficit by over $1 trillion. It contains provisions that would hurt people with disabilities, and it would repeal the ACA’s individual mandate, which would cause millions of people to lose insurance or pay significant premium increases. More importantly, I am concerned that cuts to Medicaid will be used to pay for some of these tax cuts or to address the growing deficit. 10 million people with disabilities rely on Medicaid for critical services that help them live and participate in their communities.
I am asking [Representative’s Name] to oppose this tax bill and any bill that would cut or cap Medicaid or use it to pay for tax cuts.
Thank you for taking my call!
[IF LEAVING A VOICEMAIL: please leave your full street address and zip code to ensure your call is tallied]
How to Call Your Elected Officials
https://autisticadvocacy.org/wp-content/uploads/2017/02/fact-sheet-how-to-call-your-elected-officials.pdf (plain language)
https://autisticadvocacy.org/wp-content/uploads/2017/09/Easy-Read-They-Work-For-Us-4-Making-a-Phone-Call.pdf (Easy Read)
Ex-vice president Joe Biden lost his son to brain cancer in 2015. In honor of his son, Beau, Joe Biden wanted to give hope to people with terminal illnesses. This is the idea behind the 21st-century Cures Act. The act was signed into law on December 13, 2016, by President Obama.
There are several parts to the 21st-century Cures Act. I will be writing a multi-part series on the 21st Century Cures Act and its many different components.
Basic Information Regarding 21st-Century Cures Act:
The core premise of the law is to help people with life-threatening ailments such as cancer, multiple sclerosis, and Alzheimer's for example. By getting drugs to market faster. There is approximately $6.3 billion over ten years set aside to invest in medical research. The research will be funded from existing spending mandates.
The Bill Has Its Critics
Some critics say the 21st Century Cures Act plays into the hands of big pharma. The rules and licensing standards for testing new vaccines and drugs under the Federal Drug Administration have been substantially reduced to get new medications to the public faster. An article posted on the National Vaccine Information Center website entitled Here Comes, the 21st Century Cures Act: Say Goodbye to Vaccine Safety Science. The article addresses quite well the problems surrounding the lowering of licensing standards under the FDA.
What are your thoughts/feelings about the FDA lowering its rules and licensing standards for testing new drugs and vaccines?
The tax reform bill that is currently being debated in the Senate will have devastating effects for people with disabilities and low-income families. I am posting an article that was initially written by Robyn Powell for the news organization Rewire. In the article, entitled Republicans 'Proposed Tax Plans Will Have Devastating Consequences for People with Disabilities. This article is well written.
I have created a list of senators who are still on the fence regarding aspects of the current tax reform bill. Contact these Senators now! Our lives depend on it.
I have tried to update this list as much as possible. These Senators should be contacted via email or called as soon as possible. It is important for Senators to know that people with disabilities will be horribly hurt by the current tax reform bill.Or call: US Capitol Switchboard for a member of Congress (202) 224-3121
Lastly, Contact the Whitehouse
2. Why use an ABLE Account
The ABLE Act allows individuals who were deemed disabled before the age of 26 to save money in specific accounts and not jeopardize necessary government benefits. Before The ABLE Act was passed an individual with a disability who relied on government benefits like SSI and Medicaid could not save more than $2,000 or else they would lose health care benefits, as well as home and community supports which would mean they could lose housing as well as job supports which would also cause a loss of employment. The ABLE Act and the resulting ABLE Accounts provide individuals with a disability the same right to save money that those without disabilities have always enjoyed.
3. Who is eligible for an ABLE account?
4. Are there limits to how much money can be put in an ABLE account?
Yes, $14,000/year can be contributed in total per year for people with disabilities who are not working.
Anybody can contribute, including family, friends, and individual account-holders
$14,000 limit is cumulative among all parties. $14,000 is the maximum amount that individuals can make as a gift to someone else and not pay taxes (gift tax exclusion).
If the person with a disability receives Social Security Income (SSI) they can save up to $100,000 without the funds being counted as an limits.
If a person is not receiving SSI but is receiving Medicaid/Medi-Cal save up to $300,000 or more without losing their eligibility for the medical benefit.
5. Can an ABLE beneficiary who is working contribute to their own ABLE account with some of their wages?
An ABLE beneficiary who is employed can contribute from his/her work wages up to the Federal Poverty Level (currently at $12,060) in addition to the existing $14,000 limit. The current Potential increase allowable annual contributions to $26,060 (for 2017 poverty levels. At the time this post is written.)
· Note: this would not affect existing caps on earned income and Substantial Gainful Activity , for Social Security income / Social Security Disability Insurance / Medicaid.
6. Which expenses are allowed by ABLE accounts?
Funds must be spent on “qualified disability-related expenses,” The categories are listed below:
7. May I open more than one Able Account?
No. Under the rules of the Able Act a qualified person is only allowed one account.
8. What can I do if the state I live in does not currently have an ABLE program?
A person does not have to wait to open an ABLE account. An ABLE account can be opened in any state where there is an ABLE program running. To find a list of states with open ABLE programs go to ABLE National Resource Center ( As of this writing the states in blue have ABLE programs for your review.)
9. How Will I know Which State ABLE Program is Right for Me?
In order to compare ABLE plans go to the ABLE National Resource Center. Here you are able to compare up to three states at a time. When you are looking at different states and their ABLE plans you may wish to consider the following questions in order to find the ABLE account that works best for you. The following questions come from The ABLE National Resource Center website.
Upon Opening an Account
o What proof will the ABLE program require for you to document in order to open an account or show that your disbursements are qualified expenses?
o Is there a minimum contribution to open an ABLE account?
o Is there a fee to open an account and, if so, how much is that fee?
Maintaining the Account and Fees
o Is there a required minimum contribution to your account? If so, what is the amount?
o Are the fees front end loaded or are they reduced if you leave your funds invested for several years?
o Are there restrictions on how often you can withdraw funds from your account?
o What are the investment options the state ABLE program offers?
o Are the options likely to meet your needs for limiting risk with the growth of your contributed dollars to the ABLE account?
o Does the program offer any unique or value added program elements to help you save, contribute to your account, grow the account, and manage your invested dollars?
o Does the state program offer any unique or value added program elements (such as a match or rewards program, financial literacy info or program for beneficiaries) to help you save, contribute to your account, grow the account, and manage your invested dollars? If so, what is it?
Unique to Your State
o Does your state have a program and, if so, do they offer a state income tax for contributions to their account?
o Is there a “debit card/purchasing card” available with the program? Are there added costs to this?
10. What if I want to move my ABLE account to a different state program?
A person may move an ABLE account to a different state program. However, there may be a small fee (usually around $50.) associated with moving the account to a different state’s program.
With the end of 2017 near, now is the time to put up to $14,000 in an able account if you, (the person with a disability) or family members haven't done so yet.
I have been thinking very introspectively. Is what I'm doing (in all aspects of life) assisting me to be my highest and best self? For example, is what I'm eating helping my body to function at it's highest and best ability?
Or is the money I'm spending serving me in the best way possible? Do I need this item? Or do I want it? Why do I want this item? Is the item I want assisting me to be my highest and best self?
Are my friendships/relationships in an awesome place filled with love and excitement? Or could they use improvement?
Am I filled? Is there joy in my life.
I was loyal and a devoted Invacare, power chair user for over 20 years. My first Invacare power chair was a rear wheel Storm. Built like a tank, it was extremely durable. I loved my first Invacare chair! The chair lasted a full decade before I had major issues with it. The chair was so reliable that it was sad for me to experience major breakdowns within it's last few years. I felt like I was losing an extension of myself.
My second Invacare chair a (TDX), was also well-made but only lasted eight years before I started having major issues with it. I thought for sure the chair would last for another two years just like my first Invacare chair.
I received my third Invacare chair, a (TDX SP) in February of 2012. It had problems from the very first week I received it. First I had trouble with the batteries and how far the chair could travel. The battery indicator on the joystick would drop to extremely low levels after traveling in the chair for only a mile.Second, when I would be driving the chair at full speed it frequently would just stop with without any warning. The chair would not flash any indication lights that would show something is wrong. If that wasn't enough, about every six months, I needed to replace my motors. As a concerned customer, I called Invacare, and I asked if they could help me to solve some of my technical problems with my chair. The Invacare spokesperson was not helpful. They told me to go back to my Durable Medical Equipment (DME) dealer where I bought the chair.
It was clear to me, that quality control had gone down considerably since owning my first Invacare chair. Then a friend of mine (who also used an Invacare chair) told me about the consent decree that Invacare entered into with the Food and Drug Administration (FDA)
Due to the poor quality of my third wheelchair and it's countless needs for repairs in addition to the situation between the FDA and Invacare I was feeling quite betrayed by Invacare. After all I was a loyal customer for over 20 years but, in the end, I guess money meant more to Invacare then customer loyalty and quality control.
My chair had so many problems that on the anniversary of the chair turning only four years old a wheelchair mechanic strongly suggested that I start looking into getting a new power chair from a different company. This was because as of 2016 Invacare was stilll having quality control issues of some of there products. The sales representative of my DME company and my doctor also echoed the same sentiments as the mechanic, thus ending my 20+ relationship with Invacare.
In July 2017 the FDA lifted the consent decree. The situation between the FDA and the Invacare Corporation has presented me with more questions then I have answers at the moment. Such as will Invacare reach out to it's consumer base of both sales representatives and consumers with disabilities and specifically address the two elephants in the room:
1. Why should anyone trust the Invacare brand?
2. Has quality control really improved at Invacare since the concent degree was lifted? Only time will tell.
Hey folks, it's that time of year again! The Abilities Expo is coming to San Mateo, CA!
Here is the Mobility Mentor’s short list of cool events people can participate in all weekend long.
Acupressure for Stress Release
Emergency Preparedness Resource Booth
Here are some events that are date and time specific.
Friday, October 27, 2017
Roll with the Wind: Ride-Along Race Experience
12:00pm – 3:00pm
Saturday October 28, 2017
Accessible Travel and the National Park System
1:00 pm – 2:00 pm
12:00 pm – 12:45 pm
3:00 pm – 3:30 pm
Sunday October 29, 2017
Acupressure for Stress Release
11:45 am - 12:45 pm
Putting Insomnia and other Sleep Issues to Sleep
1:00 pm - 2:00 pm
Here are the Mobility Mentor’s picks of exhibitors not to miss.
Bay Area Association of Disabled Sailors
4 Wheel Bob, a Film by Tal Skloot
Diestco Mfg. Corp. - bags made to attach to a wheelchair.
Earthquake Country Alliance - Provides earthquake preparedness information for people with disabilities.
Freedom Concepts Inc. - Bicycles designed for the needs of people with disabilities.
Movie: Freedom 2 Roll
HDS Medallion - Fashionable bags made to attach to a wheelchair.
Mobility & Access - Bicycles for people with disabilities.
Piedmont Yoga Community - A yoga studio that has classes for people with disabilities.
Shoe laces that don't need to be tied.
Find the Abilities Expo near you!
DC Metro Expo
December 1 - 3, 2017
January 19-21, 2018
Los Angeles Expo
Feb 23 - 25, 2018
New York Metro Expo
May 4-6, 2018
June 29 - July 1, 2018
August 3-5, 2018
September 21 - 23, 2018
Full Disclosure: Marissa, the Mobility Mentor, was not paid to endorse any listed company and their products. The above companies caught my interest, and I wish to check out their exhibits at the Expo.