Stop Kumbayaing and WAKE UP!

Dear Representative or Senator,

As a constituent who cares deeply about issues affecting people with intellectual and developmental disabilities (I/DD) like my daughter who has refractory epilepsy and severe developmental disabilities, I have concerns about the Tax Cuts and Jobs Act in its current form because of its impact on services for people with I/DD.

I cannot support the tax reform legislation in its current form because:
- The changes proposed to the charitable tax deduction reduce the ability of nonprofit disability service providers to fund important services for people with intellectual and developmental disabilities (I/DD)
- As the only other federal support for Medicaid long term services and supports, the House passed legislation removing the medical expense deduction could put significant strain on the Medicaid program that serves people with I/DD
- The changes to the unrelated business income tax (UBIT) impact the ability of nonprofit providers and their associations to maintain limited but important revenues
- The changes to state and local taxes would have a negative impact on certain states that obtain significant funding from these taxes for services for people with I/DD
- The House legislation's elimination of tax breaks on bond financing could significantly undermine the financing for affordable housing for people with I/DD
- The addition of $1.5 trillion to the national debt may be used to justify future cuts in Medicaid, Medicare, or Social Security which are the main federal programs that support people with intellectual and developmental disabilities.

As your office considers how to restructure our tax system, I wish to share with you tax reform principles by the American Network of Community Options and Resources (ANCOR), the national trade association for disability service providers. These principles seek to ensure the stability of services and supports that people with disabilities rely on to participate fully in society. I hope you will consider these principles and the well-being of people with intellectual and developmental disabilities as legislative tax discussions advance.

ANCOR Tax Reform Principles
1. Any process that includes changes to Medicaid should be accomplished through a process that affords sufficient opportunity for legislators, advocates, and constituents to review and provide feedback on the proposal and legislative language prior to passage.
2. Individual or corporate tax cuts or expenditures must not be paid for by cuts to Medicaid, Medicare, Social Security, or other mandatory or discretionary programs that promote independence, inclusion, and community living for people with disabilities.
3. Tax reform should not decrease revenue to an extent that revenue is insufficient to continue to fund the programs and services and supports for people with disabilities at current levels or above.
4. The charitable deduction should be maintained and improved for the non-profit sector which provides the majority of services and supports for people with disabilities.
5. Unrelated business income tax should be held harmless to protect the vital role of nonprofits and associations in the disability services sector.

I look forward to working with you to strengthen community services for people with intellectual and developmental disabilities - please reach out to me if you have any questions.

Sincerely,

Elizabeth Aquino


#RESIST

Here's a link for you to send your own letter.

Here's where you can call with a script. Do it. I beg you.

The Congressional Switchboard can help you identify your members of Congress and will connect you directly to their office - dial it at 202.224.3121 or 202.224.3091 (TTY). A short script you can use is: "I am a constituent who cares deeply about issues affecting people with disabilities. If you do not already oppose the tax reform bill coming for a vote today, please do so because it has provisions that would harm services for people with disabilities. Thank you for your hard work answering the phones."

Saturday Resistance -- Hear Me Out If You Care About Sophie and People Like Her

I take care of Sophie at home with the help of her father and a part-time babysitter because of a Medicaid waiver that she qualifies for given her cognitive and physical disabilities.She has been "deemed" a person "qualifying" of "institutional care." I am basically paid to take care of her at home, saving the government -- taxpayers -- a considerable amount of money to care for her in an institution. Those are the bald facts. We are, in a capitalist society, reduced always to a number. It saves you money to honor this social contract.

If the Affordable Care Act is repealed, this ability to care for Sophie will be severely compromised. Please read the following email that I've cut and pasted in full to learn more about what's going on for America's disabled and chronically ill.

If you can, lend your voices to the resistance.

I know many of you reading this blog are conservative voters who live in states that are gung-ho bent on destroying the Affordable Care Act. Perhaps you don't realize that despite its imperfections, it has also lent stability to millions of families like mine. Yes, we do struggle with rising premiums. We do struggle with the systematic denial of medical claims. We struggle with the ungodly amounts of money charged for pharmaceutical drugs. I am paid minimum wage to care for her at home, an amount far inferior to that which I might earn in a full-time career. I also struggle to care for Sophie without going insane, to tell you the truth, because it's just brutally hard to do what we do every single day for decades. Sophie's recent 5-day hospitalization cost more than $150,000. That would have bankrupted us if not for the Affordable Care Act and her Medicaid waiver, and I live in a grotesquely over-priced tiny bungalow in an economically rich neighborhood in Los Angeles. I have family that helps me to pay for relief, too. Unlike most people in similar circumstances, I have enough money to get therapy to help me to deal with the caregiving, with the constant stress of seizures, with the possibility of Sophie dying before me or dying afterward.

I'm telling you this to emphasize just how life-altering it was when the Affordable Care Act passed, even with all of its absurd complexity and kow-towing to the big insurance companies. The pre-existing conditions component, the lifetime maximum component, the preventive care component, the birth control component -- shall I go on? Our family was careening toward serious financial difficulties and running the risk of going uninsured before the Affordable Care Act was passed. Sure, we might have been "saved" by family, we might have taken the risk to have no insurance at all. I don't know. What I do know -- again -- is that I have plenty of resources, both financial and emotional and that many, if not most, of my fellow caregivers, their children and families, do not. So I'm advocating for them, really, far more than myself.

Even if none of this comes to pass, if the draconian machinations of Eddie Munster, Drumpf et al come to nothing, if the "replacement" even happens, the psychological distress that many of us are feeling right now is really difficult to convey without sounding whiny, maybe, or privileged. Then I remember what the hell we've all been doing, how much we fought for the ACA to begin with and how we have to do it all over again, even as we continue to advocate for and keep our children ALIVE.

If you can, lend your voices to the resistance.

Read this:

ICYMI: ANCOR Urges Congress to

Protect HCBS as Changes Begin

 

Alexandria, VA – Yesterday, the 115^th Congress approved a budget resolution that sets the stage for the repeal and replacement of the Affordable Care Act (ACA), and allows for changes to the Medicaid program. In response to this action, ANCOR responded with a statement urging Congress to protect the HCBS Medicaid program, and to consider the widespread effects any alterations to the ACA and Medicaid would bring about for people with intellectual and developmental disabilities, and their loved ones.

 

ANCOR has also alerted its members – community service providers to people with intellectual and developmental disabilities – about the vote, and encouraged them to relay these consequences to their representatives and senators. 

 

ANCOR CEO Barbara Merrill responded to yesterday’s vote with the following statement:

 

"Now is the time we must weigh in and let Congress know that individual lives depend on the Medicaid home and community-based services system, and that no changes should even be considered until stakeholders like ANCOR see what the proposed changes are."

 

See below for ANCOR’s statement in its entirety.

 

 

“Today, the 115th Congress concluded their approval of a budget resolution that sets up the mechanism for Congress to repeal and replace the Affordable Care Act and also, through a process called reconciliation, make changes to the Medicaid program.

 

These changes include moving forward with proposals to transform Medicaid to a block grant or per capita cap program. Republicans, who hold the majority in both Houses of Congress, have indicated their intention to move forward quickly with this plan.

 

‘Now is the time we must weigh in and let Congress know that individual lives depend on the Medicaid home and community-based services system," said Barbara Merrill, ANCOR CEO, ‘and that no changes should even be considered until stakeholders like ANCOR see what the proposed changes are.’

 

ANCOR sent an alert this afternoon to its members – community service providers to people with intellectual and developmental disabilities – and urged them to contact their senators and representatives to ensure they understood that decisions to alter the Affordable Care Act or Medicaid as a whole have direct, and at times immediate, consequences for people with intellectual and developmental disabilities and their families who rely on home and community-based services.

 

‘The Affordable Care Act includes the creation of innovative and effective programs, like the Community First Choice Act, which have strengthened the Medicaid program and improved the ability of states to provide quality residential and day services for individuals with I/DD,’ explained Esmé Grant Grewal, Senior Director of Government Relations for ANCOR. 

 

‘The Medicaid HCBS program, while not perfect, is essential to making sure that hundreds of thousands of individuals with disabilities can live in the community. Historically, when states needed help in shifting children and adults with these disabilities out of large and isolating institutions, the HCBS program was created as a federal and state program to support that need.’

 

ANCOR urges Congress to engage stakeholders when considering changes to the Affordable Care Act and Medicaid, and offers itself as a resource to any Congressional office.”

ANCOR is the American Network of Community Organizations and Resources. 

56 Million People with Disabilities Live in the United States

Sophie, 2007

I know I read somewhere that this year's election is costing something like 10 gazillion dollars -- all money that goes toward television ads, giant billboards, staffing, plane rides, dinner parties and barbecues and vote-buying, I imagine. Or influence-buying or whatever. And yeah, I know that some of that influence peddling is for causes that I support and believe in. But, whenever I hear the numbers -- from whatever side -- I feel nauseous for obvious reasons that I'm not going to talk about here. When the DNC calls me on the phone, asking for money, I hang up. I have donated absolutely nothing this year to the Obama campaign, NOT because I don't want him to win the election, but rather because I'm making, albeit ineffectually, a tiny little protest about the obscene amounts of money thrown around. I want to be able to say, in my heart, that I haven't contributed to the oligarchy -- at least in any meaningful way.

Allow me to be a bit narrow-minded in this space and pluck one issue out of the ether -- the issue of disability -- and judge the candidates running for President.

Mitt Romney and Paul Ryan's economic and social platforms, particularly Ryan's Medicaid plan, spell disaster for children and adults with disabilities. Nearly every major disability policy expert, as well as non-profit foundation censures the Ryan plan.  I don't pretend to understand the complexities, although when I hear the word "voucher," I imagine myself shopping for healthcare for Sophie in the "free market" which makes me think about poking my eyeballs out with ice-picks. You can read about them (not my eyeballs -- the Ryan Plan and what it means for the disabled) HERE  and HERE.

“For each of the two years that Paul Ryan has been chair of the House budget committee, he’s produced budgets that we’ve opposed,” said Katy Neas, senior vice president for government relations at Easter Seals. “The pick of Paul Ryan gives people another opportunity to look at the policies that he and the other candidates have proposed.”

The website disabilityscoop.com  has good discussions about disability and politics, if you want to explore the issue further.

President Obama recently met with a group of youth with disabilities to discuss the needs of the community. While there was no one there with a severe disability, like Sophie, the issues addressed -- unemployment, inequality, access, inclusion, healthcare and medication -- were met by the President with seeming sincerity and seriousness. Aside from the Affordable Care Act, which is far from ideal but makes inroads for those with disabilities, it remains to be seen what progress will be made. Something tells me that true awareness and empathy for the most vulnerable in our country is a great step forward.



I'm waiting anxiously as are 56 million others in this great country.