The Autism Society, the nation’s leading grassroots autism organization, exists to improve the lives of all affected by autism. We do this by increasing public awareness about the day-to-day issues faced by people on the spectrum, advocating for appropriate services for individuals across the lifespan, and providing the latest information regarding treatment, education, research and advocacy.
The current continuing resolution (CR) expires at midnight tonight. Last night, the House passed a 4-week CR through February 16. It includes a 6-year extension of the Children’s Health Insurance Program (CHIP) and delays several Affordable Care Act (ACA)-related taxes, however, it does NOT include extensions for the other expired health programs (e.g., community health centers).
Now it is up to the Senate. However, the Senate does not appear to have the 60 votes needed to pass it. Most Democrats oppose the bill unless key issues are addressed (including DACA, community health centers, and a deal to raise both defense and non-defense discretionary (NDD) programs spending caps) and a few Republican Senators have also indicated possible no votes. Senate Minority Leader Schumer has suggested another possible short term CR while these issues are worked out but no votes have yet been scheduled.
This morning, HHS released its FY 2018 contingency plan in the event of a shutdown, showing that 50% of the Department’s staff would be furloughed.
Examples of priority disability-related programs would continue under a shutdown are:
Centers for Medicare & Medicaid Services (CMS) – CMS would continue key Federal Exchange activities, such as open enrollment eligibility verification, using Federal Exchange user fee carryover. In the short term, the Medicare Program will continue largely without disruption during a lapse in appropriations. Additionally, other non-discretionary activities including Health Care Fraud and Abuse Control, and Center for Medicare & Medicaid Innovation activities would continue. States will have sufficient funding for Medicaid through the second quarter, due to the continuation of authority under the CR for appropriated entitlements, and CMS will maintain the staff necessary to make payments to eligible states from remaining Children’s Health Insurance Program (CHIP) carryover balances.
Examples of priority disability-related programs that would NOT continue are:
Administration for Community Living (ACL) – ACL would not be able to fund the Senior Nutrition programs, Native American Nutrition and Supportive Services, Prevention of Elder Abuse and Neglect, the Long-Term Care Ombudsman program, Protection and Advocacy for persons with developmental disabilities, or Independent Living Centers and services.
ACF – ACF would not continue quarterly formula grants for Social Services Block Grant, Child Welfare Services and the Community Service Block Grant programs. Additionally new competitive grants, including Head Start and other social services programs, would not be made.
Each federal agency must prepare contingency plans and others should be available shortly.
Social Security payments would continue under a shutdown though other administrative functions would likely be adversely affected.
Courtesy: Consortium for Citizens with Disabilities
TO: Autism Society of America Affiliates
FROM: Kim Musheno, Vice President of Public Policy
RE: Final Tax Bill Update and Action Needed
It’s going to be a packed week for Congress this last five days before leaving for the holiday. Congress is expected to pass the final tax-cut bill and they must finalize the Fiscal Year 2018 appropriations bills to prevent a government shut-down (the current continuing resolution expires on Friday, Dec. 22). Negotiations over the passage of the DREAM Act, a bill to reauthorize the Children’s Health Insurance Program (CHIP), and raising caps on the discretionary funding will complicate the outcome of these decisions.
Late on Friday the conference committee working to reconcile the House and Senate tax cut bills released the final bill. The House is expected to vote on the bill Tuesday (Dec. 19); the Senate will likely vote on Wednesday (Dec. 20). Here are some of the key disability provisions of the bill posted online:
Individual Mandate under ACA is repealed. “Elimination of Shared Responsibility Payment for Individuals Failing to Maintain Minimal Essential Coverage. The conference agreement follows the Senate amendment.” (p 153)
Disabled Access Credit – good news is that this was taken out of the final bill so that this important deduction will remain in law. “Repeal of credit for expenditures to provide access to disabled individuals. … The conference agreement does not follow the House bill provision.” (p 290)
Work Opportunity Tax Credit is will also remain in law. This is good news as this incentivizes businesses to hire people with disabilities. “Repeal of work opportunity tax credit. … The conference agreement does not follow the House bill provision.” (p 285)
Orphan Drug credit is reduced to 25%. This tax deduction is important to provide incentives to develop drug therapies for rare diseases and conditions. “Repeal of credit for clinical testing expenses for certain drugs for rare diseases or conditions. … The conference agreement follows the Senate amendment, but reduces the credit rate to 25 percent of qualified clinical testing expenses.” (p 282) Joint Committee on Taxation score (attached)
While we are pleased to see some of the disability-related deductions in the final bill, it still increases the national debt by at least $1.5 Trillion. The President and House Speaker Ryan and others have not been shy about saying stating that they will pay for this deficit with cuts to Medicaid, Medicare, Social Security and other programs that support people with disabilities. It will also destabilize the health insurance marketplace by repealing the tax individuals are required to pay if they do not get covered by health insurance. The Congressional Budget Office estimates this will lead to 13 million not signing up for coverage and at least a ten percent increase in premiums.
Senate and House leaders are expected to vote on sweeping tax bill next week. Please see recent news and developments below. Let’s keep the pressure on and continue driving calls to the House and Senate urging them to vote NO on the Tax Cuts and Jobs Act.
12/18 or 12/19 – The Senate may vote and will have 10 hours of debate prior to the votes.
12/19 or 12/20 – The House may vote.
The Senate is the best bet for stopping the bill. Priority targets are Collins (ME), Corker (TN), Flake (AZ), Rubio (FL), and Heller (NV). Little is known about McCain’s health and when he will return from the hospital.
Rubio (FL) announced this week that he is a NO vote unless changes are made to the child tax credit.
Consortium for Citizens with Disabilities (CCD) 12/13 – Letters sent to all House and Senate offices signed by 39 CCD member organizations. See Senate letter.
12/18 – Autism Society is co-hosting another National Call in Day sponsored by several CCD member organizations. See Facebook and Website. The event includes a Thunderclap at noon on Monday
New Resources Tax Deductions and credits for donating to education non-profits & private schools (that do not have to adhere to the IDEA) –
Some things we’ve learned about the conference report: – It does not include the health care bills advocated by Sen. Susan Collins (R-ME) that has the potential to help stabilize the insurance marketplaces.
– It does not boost the Child Tax Credit for struggling families, as Sen. Marco Rubio (R-FL) has urged.
– Credible analyses have shown it increases deficits by at least $1 trillion, and potentially much more.
– The conferenced bill further lowers the top tax rate for top income earners—from 39.6 percent to 37 percent.
– It gives corporations their tax cuts immediately, but with slightly less-steep rate reductions (cutting the corporate rate from 35% to 21% instead of 20)
Repeals the individual mandate in the Affordable Care Act which the Congressional Budget Office analysis says will lead to:
– 13 million more Americans uninsured
– Nearly $2,000 in insurance premium increases for middle class families
– An insurer exodus from markets
– And they are paying for it with cuts to your health care and retirement
The bill will force an immediate $25 billion cut to Medicare and could jeopardize other programs, such as the Vocational Rehabilitation and Social Services Block Grant
Republican lawmakers are already stating they plan to cut Social Security, Medicare, and Medicaid to pay for the increased deficit.
Forwarded from Americans for Tax Fairness, including upcoming events:
HOUSE Thanks to the hard work of so many advocates, so far, we’ve had over 700 events nationwidesince October. This week, we’ve been focused on actions in key House districts and we’ve had over 40 events this week, with mostly a Healthcare & SALT message.
All events can be found on this grid and, as always, on http://stoptrumptaxcuts.com/events/.
Faith in Public Life and other coalition partners are anchoring faith led healthcare actions this week and next week at key members’ offices. Details are still being finalized, but we’re hoping to have similar actions to the one clergy leaders held in Sen. Collins’ office last week.
ARIZONA: In partnership with Mi Familia Vota, there will be a Dreamer and clergy led event at Senator Flake’s Phoenix office, urging him to find his moral consciousness and vote NO on the tax bill and realize his deal on DACA is a fake promise. Messages to Sen. Flake are also being delivered on the ground and through Spanish language radio ads that will air this weekend.
TO: Autism Society
FROM: Kim Musheno, Vice President of Public Policy
On December 2, the Senate passed their tax bill 51-49. Senator Bob Corker (R-TN) was the only Republican to vote against the bill. See The Hill write up summarizing the dramatic day and the New York Times which includes links to see how members voted on certain amendments.
Thank you to everyone who acted and galvanized their grassroots to take action against this bill that will hurt people with disabilities and pay the way for massive cuts to Medicaid and other programs on which people with disabilities rely. YOU MADE A DIFFERENCE!
While neither bill directly cuts Medicaid, they dramatically cut the revenue necessary to fund Medicaid, leaving it vulnerable to future cuts. In combination with the budget that passed three weeks ago – outlining over $1.1 trillion in cuts to Medicaid – if this tax bill passes the likely next step will be cuts to Medicaid.
This may be the most important vote of the year with the most far-reaching impacts for every individual and every family in the country!
We must now contact Representatives THIS WEEK! Please generate calls and letters, engage in social media, and attend rallies and other events.
The Autism Society is very disappointed that the Senate today chose to make a bad bill even worse by using the already failed “skinny” health care proposal to pay for tax cuts that disproportionately help corporations and those who are well-off. The CBO has already determined that repealing the individual mandate will reduce the number of insured by at least 13 million people and increase premiums. The House bill is no better. It eliminates deductions, such as the medical expense deduction, that would have devastating impacts for many families with children with autism who also have chronic health care needs and the work opportunity tax credit that helps people with autism get jobs. The Autism Society urges Congress to work in a bipartisan way to reform the tax system in a way that does not disproportionately and negatively impact people with disabilities and families.
Well done, advocates! Days after patching together a healthcare plan designed to pull the rug out of millions of Americans who rely on Medicaid to achieve the highest quality of life, Senate leaders were forced to pull the Graham-Cassidy repeal proposal today due to lack of votes. Your collective voices played a significant role in the victory and demonstrated to Congress that the autism community would unite to oppose any proposal that strips valuable care of away from those who need it most. We now urge elected officials, healthcare experts, and policymakers to come together to develop a bipartisan solution for how our nation can address the need to have quality health care coverage available for all.
By Scott Badesch, Autism Society President and CEO
If you thought the previous attempts to repeal the Affordable Health Care Act were bad, the latest proposal, the Graham-Cassidy bill, is much worse. While the Congressional Budget Office (CBO) has yet to score the bill, an initial review suggests the bill cuts Medicaid funding more severely, significantly impact a state’s ability to help the poor and those with a disability, endangers protections for preexisting conditions, allows waivers to eliminate essential health benefits, and results in millions losing access to affordable health care.
Again, we are witnessing Congress attempt to pass repeal legislation without adequate time to allow the millions to be impacted by this bill to weigh in on the proposal. Additionally, there is an all-out effort pass the Graham-Cassidy bill before September 30, since after that date, the bill requires 60 votes to pass.
Please right after you read this, immediately call your senators (202-224-3121) and tell them vote NO on Graham Cassidy Bill. Here is what you can say:
– VOTE NO without a CBO score on the final version of the bill the Senate votes on
– DO NOT vote on any repeal legislation without providing ample opportunity for legislators and the general public to understand how the bill will affect the American people.
– VOTE NO unless you have full confidence that the bill will not harm the poor or people with disabilities.
Please urge your social media followers, supporters, and friends to do the same! We need all hands on deck over the next 10 days to ensure this dangerous bill does not pass.
By now, we have all witnessed the shocking reports of Hurricane Harvey’s destruction in southeastern Texas. Now that the record breaking rain has subsided, families are undertaking the arduous task of rebuilding their lives. The storm’s impact on autistic individuals and families living with autism adds a layer to recovery efforts often not addressed by traditional relief organizations. While we applaud the exceptional efforts of FEMA, the Red Cross, United Way, Salvation Army, first responders, and other government agencies, we know that the autism community faces a unique set of challenges during these difficult times.
As the father of a now adult son on the spectrum, I know first-hand the effects natural disasters can have on the entire family. We experienced four terrible hurricanes while living in Florida and South Carolina. Each time our son encountered a myriad of challenges due to the storms, including sensory issues as a result of loud noises and loss of routine due to power outages and school closures. We were fortunate; we weren’t forced to evacuate our home. Imagine a family with an autistic child required to leave home and sleep in a shelter with unfamiliar noises, lights, and little space. Imagine constant moving from city to city and with no real sense of what the future holds for your family. Imagine having to relocate because your home is now uninhabitable right before the start of the upcoming school year. This is now is a reality for countless families.
Fortunately for those in Texas impacted by the storm, the Autism Society of Texas is there to help. Upon learning of Harvey’s projected path, our Texas affiliate immediately sprang into action creating a response plan for the storm’s aftermath. Since last Saturday, the Autism Society of Texas has served as a vital lifeline for families seeking information and guidance in preparation for the storm. From dispersing emergency gift cards, holding the hand of a distraught mother to aiding a family seeking temporary shelter, the Autism Society of Texas answered the call for storm victims seeking assistance. Autism Society of Texas Executive Director, Suzanne Potts, continues to advise state and local agencies on how to best respond to the needs of individuals with autism. And I am so very proud of how our nationwide network of Autism Society affiliates, volunteers, and staff mobilized and sent resources to support our friends in Texas. The work is far from over. Right now I am headed to Texas to help our affiliate while they coordinate relief efforts. I will continue to blog about our progress in Texas and hope you will join me in supporting the road to recovery. Please read our Hurricane Relief update to learn how you can help make a difference.
Luisa Jacques attended the Claremont Colleges, Pitzer, where she received her B.A. in Sociology. She is the mother of two children and currently works as a substitute teacher.
Netflix’s original dramedy, “Atypical” which premiered August 11, delves into the life of a young man entering his senior year in high school who happens to be a high-functioning autistic person. The show follows “Sam” and his family through this turbulent period, giving its audience “not in the club” an eye-opening opportunity to connect with this family and their daily issues. My son, Anthony, who is on the autism spectrum, himself, was given a small role. His name is “Christopher” and through the mother’s’ long-standing friendship, happens to be a part of Sam’s life. Wait. What? Other than performing scenes in his theatre classes at school, Anthony’s never really acted. How could this be possible?
Probably, most likely, NEVER IN A MILLION YEARS is what I thought when Anthony shared his aspirations of becoming an actor. Now, before any of you starts hissing and spitting nails, it is not because I didn’t believe or have faith in my son’s abilities. My reaction was based more on the premise of reality. I mean, come on. Nearly everyone wants to be famous whether it be through acting, singing, professional sports, and the like. Alas, the truth of the matter is, particularly in the field of entertainment, very few individuals actually realize their dreams come to fruition. This is exactly how I saw it. It is a dream of Anthony’s. In my mind, this most likely wouldn’t/ couldn’t come true for him.
Indulge me and add to the probability that dreams do not pay bills or buy food or videogames, or socks (which we are currently obsessing over, you paid how much for one pair of socks?!) It simply isn’t practical. What’s that they say, “For every light on Broadway…” Well, like every parent with children, whether on the spectrum or not, I want my child to be happy, healthy, safe, successful, and in my case independent because as most parents with children on the spectrum know, independence isn’t necessarily a given. Therefore, the entire notion of acting—as a career—for my son—who is on the autism spectrum, simply did not afford the peace of mind I need to feel comfortable about my son’s future.
Theatre as an elective and extracurricular activity, thankfully, did provide Anthony an escape from the everyday challenges of the neurotypical school day and more importantly, a chance to belong and feel comfortable in his own skin. So, naturally, I supported and encouraged his interest in the Arts. However, in my mind I saw acting as a helpful diversion and nothing more. The odds stacked against the neurotypical, starving actor are bad enough. Now let’s factor in someone who is obviously a deviant of the of the precious mainstream. As with anything or anyone who is different, there comes an inevitable pestilence that suffocates one’s mindset. Preconceived notions take root and it is comfortable and easier for people to believe what they want rather than to open themselves up and take a chance on the unknown. For instance, Anthony diligently participated in theatre throughout his middle and high school years. He did very well in all his theatre classes and had proven his dedication to the Art. Finally, in his senior year, he had built up the courage to audition for the high school play. While not expecting the lead role, I surely believed he would get something. To my dismay, Anthony was not cast in the play.
Flashback: Fred Mertz. I couldn’t help but think of the classic “I Love Lucy” episode in which Fred is upstage, unbeknownst to Ethel, and he is methodically walking across the stage, back and forth, to and fro, no lines just carrying this ridiculous, nonsensical tree that keeps getting bigger and bigger with every crossing. “Really?!?” was my hyper-protective, yes, biased but logical, first thought. You couldn’t “Fred Mertz” my son?!? Anthony remained committed to his quest, his lifelong dream, despite this dismissal. Then, Atypical happened. What a resounding testament to diligence, commitment, and the simple yet powerful belief in oneself. I am extremely grateful, honored, ecstatic, and so proud that Anthony is able to be a part of this ground-breaking project. Netflix is giving a long, overdue voice to a significant issue that touches the lives of so many people on so many levels. ASD is a multifaceted diagnosis which can devour the soul. Atypical offers a rebirth, if you will, in a comical yet sensitive and informative manner. As a former special ed health aide and now a substitute teacher, partial to special ed classes, I am excited that Atypical offers a unique platform which can finally shatter the stereotypical, one-dimensional, fallacy that “Rainman” equals autism. It’s time to dispel the confining labels that society so readily slaps on individuals only to perpetuate complacency. As a mother of a child with autism, I love that this show is able to emphasize differences yet keep it relatable, as a whole. One size doesn’t fit all, people! When Anthony was first diagnosed, I accidentally used the term, normal. (UGH!) My then 4 year old daughter quickly reminded me, “Mom, why would anyone want to be normal? It’s so boring.”
Tips from an interview with Mike Tripodi, a Board member and member of the Adult Support group of the Autism Society of the Greater Capital Region in Albany, NY. Mike is also a Volunteer Shelter Manager for the American Red Cross, Eastern NY Region. He has some advice from his experiences as an individual who is on the spectrum for others who are on the spectrum and who may have to evacuate to a disaster shelter.
There are a couple of issues that will affect many who are on the spectrum when it comes to disaster shelters.
1. Noise and Lack of Quiet Space.
Shelters are generally a large open space with about a hundred people. They are noisy, public spaces 24 hours a day. Sometimes they may have lights that can’t be shut off, and it is very tight quarters. Encourage members to bring noise canceling headphones, comfort items, bedding and toys. Anything you need in public places, bring. Often in evacuation situations there may be a lack of cots, blankets and 90% of the time there are no pillows provided. After the storm, these supplies will be more available due to having time to ship them into the area.
Pets are not allowed in Red Cross shelters due to many reasons – health code regulations, sanitary reasons and shelter safety. Often pet shelters are set up in conjunction with a human shelter, so that people can be close to their pets. However this may not be the case depending on the local resources of the county, town or local Humane Society or ASPCA. Service animals are allowed, however, that does not include comfort animals. Bring paperwork. Locate pet shelters by calling 211.
3. At Registration, Advocate for Dietary/Sensory Needs.
When registering for the shelter, make sure you notify them of your sensory needs and special dietary needs. You will need to be interviewed by the Disaster Health Services, Disaster Mental Health, or the Disabilities Integration Staff. They will interview you and ask a series of questions to assess your needs. These are completely confidential. One person can act as a spokesperson for a household, if that is easier. They will work with you if you need medications but you should bring your medications. Generally the feeding manager can accommodate your needs, but it may take an initial 24 hours to get in place. If you have issues with salt and are given MRE’s (Meals Ready to Eat) or heater meals, be aware they have more salt content than a regular meal. They also are high calorie items.
Disasters will often disrupt routines. After a few days, shelters will develop a routine, and will try and stick to it for the rest of the response. Lights on/Lights Off and meals will eventually be scheduled. In disaster shelters, they try to establish routines – they call this the “New Normal.” Shelters run daily town hall meetings. You can volunteer to help with cleaning, setting up cots, food distribution, etc.
Also a personal plea: At the shelter please know that everyone there is working their best to meet everyone’s needs. The workers are 98% volunteers who are from all over the country coming together to help the community that is impacted. They are under a lot of stress working 20 hour days, sleeping on a cot, and far from home. Remember to thank them, and help them help others.
Again, you can find info on open shelters and what to bring to a shelter at this website:
Or download the Red Cross Hurricane or Emergency App from your appstore – you can search for shelters and get alerts!
This information is specific to Red Cross run shelters. Those by other agencies may be slightly different but generally the same.
Mike Tripodi has been a Red Cross Volunteer for 19 years, and has responded to many natural and man-made disasters over the years. He currently serves as a member of the Northeast Division Disaster Response management Team, and has a local disaster responder in the Northeastern NY Chapter. In addition to his Red Cross Roles, Mike is also a Firefighter / EMT with the Shaker Road Loudonville Fire Department, and is an EMT with the Delmar- Bethlehem Emergency Medical Service. Mike was diagnosed five years ago, and has been involved in the Autism Society of the Greater Capital District.