1) What’s Happening in the Nation’s Capital?
Healthcare Reform Moves Forward, Senate Passage Expected
2) National News
Senate Approves $3 Million Funding Increase for IL
The Manager’s Amendment: NCIL Priorities Live to Fight Another Day
Opinion Editorial on James Cameron’s Avatar: Watch Some -Isms This December!
3) State News
Illinois CILs Find Budget Cuts Hit Hard, State Payments Running Behind
Mom with Disability Fights for Custody: Father Claims Her Disability as Cause to Remove Child
4) Announcements and Additional Resources
NCIL Board Member Carol Jean Reynolds and Others Appointed to NCD!
2009 Member Outcomes Deadline: Tomorrow, Showcase Your CIL or SILC!
Healthcare Reform Moves Forward, Senate Passage Expected
Early Monday morning, as our nation’s capital recovered from “Snowpocalypse 2009”, the Senate voted to end debate on a manager’s amendment, a milestone in the reform process. The vote signified that Democrats had locked in the 60 votes needed to get their recently-modified healthcare bill through their chamber this week.
Further progress was made this morning, when the Manager’s Amendment to HR 3590 was approved by the Senate. Tomorrow they will vote on a substitute amendment, a motion to end debate of the bill, and final passage. Based on the estimates of arcane Senate processes and schedules, it appears that there will be a dramatic final vote for passage of HR 3590 on Thursday evening, Christmas Eve. The revised bill will cost an estimated $871 billion over the next 10 years.
After its expected passage on Thursday, the bill will go to conference, where leaders from both chambers and relevant committee chairs will work out compromises between the two bills, which will enable the bill to be passed by both chambers again.
It is likely that whatever bill the Senate passes will only be modified slightly, in order to avoid losing support from any of the 60 Senators needed to overcome a filibuster. There are major differences in how the healthcare reform is paid for in each bill, and the public option passed by the House (but not the Senate) remains a point of contention. If the House does not adopt most of what the Senate approved, it risks a potential stalemate as the conferees work to create a bill that can be passed.
NCIL is pleased with the inclusion of the CLASS Act in both bills, as well as the full language of the CFC in the Senate bill, which is supported in the House version by a Sense of Congress provision. Both bills also include a requirement for the development of standards for accessible diagnostic and other medical equipment. The ARC reports that the bill also includes:
- Major insurance market reforms, including elimination of pre-existing condition exclusions and annual and lifetime caps;
- Coverage of rehabilitation and habilitation services and devices in the essential benefits package for the new insurance Exchange; and
- Expansion of Medicaid eligibility up to 133% of the federal poverty level.
Senate Approves $3 Million Funding Increase for IL
On Saturday, the Senate took a break from the healthcare debate to finish work on the 2010 Federal Budget. By a vote of 88-10, the Senate approved the final piece of the budget already approved by the House. As we reported in last week’s edition, the other already-approved section of the 2010 budget included a $3 million increase for Centers for Independent Living. This is a big victory for the Independent Living Program. Unfortunately, Part B grants did not receive an increase.
Because the previous Continuing Resolution was set to expire on Friday, December 18th, the House approved a one-week extension of the CR to allow the Senate to pass the defense measure and also allow the President time to review the bill before signing. It is expected that the President will sign the spending bill, and the newest increase will take effect for CILs on October 1st of 2010.
NCIL members, leadership, and staff made tremendous efforts to achieve increased Part C funding for two consecutive federal fiscal years, as well as funding in the American Recovery and Reinvestment Act. As preparation for the new budget cycle begins early next year, NCIL will again be pushing for an increase to Part B and Part C dollars to bring funding for Independent Living to appropriate levels.
The Manager’s Amendment: NCIL Priorities Live to Fight Another Day
The Manager’s Amendment is a single amendment drafted by the Senate Majority Leader, which contains numerous provisions previously offered as single amendments and last minute compromises intended to win the support of hesitant senators. The 393 page amendment was offered late last week and after minimal debate was approved by a margin of 60-39. There were no substantial changes made to the CLASS Act language, and the Community First Choice Option was not stripped from the Senate bill. Read the Manager’s Amendment (PDF). NCIL applauds the Senate for maintaining two key priorities for the disability community.
In the Senate bill, the government health insurance program known as the “public option” was replaced by a national system of non-profit insurance plans, much like what federal employees access. The plans will be offered through each state’s health insurance exchange, and the costs and benefits of the plans will be negotiated by Office of Personnel Management. The national plans will be available in all 50 states by the 4th year their plan is offered. The plans must be offered in all geographic areas of each state and the benefits package must meet the same minimal standards as other plans in each state’s exchange.
Another provision of significance provides incentives to states to offer home and community-based services as an alternative to nursing homes. An increased federal match will be given to states where less than 50% of Medicaid expenditures go to non-institutional care to improve the situation. Eligibility standards must be maintained.
For questions about the healthcare legislation or process, please contact NCIL Policy Analyst Jason Beloungy at 202-207-0334 (toll-free 1-877-545-3400), ext. 1008, or jason@ncil.org.
Opinion Editorial on James Cameron’s Avatar: Watch Some -Isms This December!
Source: FWD / Feminists with Disabilities for a Way Forward [excerpted]
Once I… took a gander at the available information on Avatar, slated for a 18 December release date here in the good old US of A, I just about blew my stack. …The film is set on the moon Pandora, occupied by a people called the Na’vi. Who just happen to be nine feet tall, blue, and sparkly. Oh, and they live “in harmony” with the natural resources on their planet. The writeups I’m seeing are making references to “simplistic people,” “unspoiled world,” “deep connection with nature,” etc…
Naturally, peaceful blue aliens cannot be allowed to live out their lives unmolested, because this is Hollywood. Enter Jake Sully, a white human male who is sent to help humans establish a foothold so that they can exploit the planet’s natural resources… The Na’vi are naturally not onboard with this plan, hence, conflict! Our plucky human falls in love with a Na’vi woman, of course, and becomes trapped in conflict between, well, colonialism and noble savages. Ah, an allegory for the ages.
Jake, you see, is a veteran with paraplegia. And the reason he wants to go to Pandora is so that he will be put in an able body: An Avatar, as they are known in the movie. Or, at least, his consciousness will be projected into that body, since only the Avatar can survive in the environment on Pandora. Oh, hey, did I mention that the Avatars look like the Na’vi, so Jake is going to be in, well, blueface? Yes, the paraplegic needs to become a racial impersonator in order to overcome his disability.
Yeah, that’s right. This is a movie which is not only racist as all getout, but also centers around a Miracle Cure! Which, of course, means that the disabled character will be played by an actor in crip drag. And, of course, this story automatically assumes that having paraplegia and being a wheelchair user is a tragedy which would make one bitter and furious at the world, and that, of course, everyone would want a cure. Read this article in full and see also: 20 Science Fiction Characters Who Got Their Legs Back.
Illinois CILs Find Budget Cuts Hit Hard, State Payments Running Behind
Source: Chicago Tribune, by Judith Graham
Twenty-three Independent Living Centers across Illinois help people with serious disabilities find jobs and services, secure care from personal assistants and live in their own homes or apartments. But as the state enacts budget cuts and delays payments to social service agencies, Centers are starving for cash -- and several are struggling to survive. As the organizations slash services, hundreds of vulnerable Illinoisans may find themselves without supports they've come to rely on, and some may end up in nursing homes, costing the state extra money.
In Elgin, the FITE Center for Independent Living has cut its budget 17 percent, laid off six of 15 staff members, closed its Aurora office and run through all its reserves since July. On Wednesday, disaster was forestalled when the Illinois comptroller's office promised to send a check for $48,299 by the end of the week, according to Marci Savage, executive director. She'd been preparing to tell another eight staff members that Friday would be their last day at work. The state still owes the FITE Center $40,000, but "at least for the moment we can continue to help our clients," Savage said.
In Forest Park, the Progress Center for Independent Living, which serves more than 4,000 people with disabilities each year, has been paid $169,700 since July but is still owed nearly $100,000 by the state, which funds three-quarters of its budget. The Center has handed out pink slips to three staff members and left five positions vacant because of the financial crunch, according to Executive Director Horacio Esparza. More than half of its employees are people with disabilities. If payments continue to be withheld, the Center may have to consider shutting its doors within the next several months, Esparza said.
In Belleville, LINC Inc. is waiting for about $75,000 from the state and has trimmed its 2010 budget by 22 percent (85 percent of its budget comes from the state). Since July, the Center has laid off four of 14 staff members and isn't replacing another employee who left. "I'm worried that we're racing toward a cliff at 90 mph in Illinois, and the people who are going to bear the brunt of all the bad things happening to social services will be the most vulnerable," said Executive Director Lynn Jarman.
In Chicago, Access Living has more support from foundations and donors than other Centers. Yet it has laid off three staff members, canceled travel and eliminated staff training as state payments lag three months behind, said chief financial officer Jerry Rauman.
Doug Morton, a planning administrator with the Illinois Department of Human Services, acknowledged the state is delaying payments significantly this year, saying "it's out of our hands." He would not address agencies' specific economic situations. Illinois Comptroller Dan Hynes estimates that $4.4 billion in "unpaid obligations" have piled up because the state doesn't have money to pay its bills.
All together, nearly 10 percent was cut from Illinois' $5 million budget for Independent Living Centers in 2010 -- a fraction of the $1 billion Gov. Pat Quinn is charged with slashing from the state's budget.
Though federal stimulus funds will become available to some Centers over the next four years, most of that money hasn't been distributed yet.
Mom with Disability Fights for Custody: Father Claims Her Disability as Cause to Remove Child
Source: Chicago Tribune, by Sara Olkon
Can a quadriplegic woman be a good parent? Her ex-boyfriend filed a custody suit that says no.
Kaney O'Neill knows she has limits as a mother. The 31-year-old Des Plaines woman cannot walk, move her fingers independently or feel anything from the chest down. A decade ago, O'Neill was a Navy airman apprentice when she was knocked from a balcony during Hurricane Floyd, leaving her a quadriplegic.
When she discovered she was pregnant last December, she felt fear and joy, a journey the Tribune chronicled in August. She quickly embraced the opportunity to raise a child, feeling she had the money and family support to make up for her paralysis.
David Trais, her ex-boyfriend and the 49-year-old father of their now 5-month-old son, disagreed that she was up to the challenge. In September, Trais sued O'Neill for full custody, charging that his former girlfriend is "not a fit and proper person" to care for their son, Aidan James O'Neill. In court documents, Trais said O'Neill's disability "greatly limits her ability to care for the minor, or even wake up if the minor is distressed."
O'Neill counters that she always has another able-bodied adult on hand for Aidan -- be it her full-time caretaker, live-in brother or her mother. Even before she gave birth to Aidan, O'Neill said, she never went more than a few hours by herself.
The custody case, expected back before Cook County Judge Patricia Logue next month, raises profound questions about what rights parents [with disabilities] have to care for their own children. Ella Callow, the director of legal programs for the National Center for Parents with Disabilities and their Families, said disabled parents are incorrectly "perceived as unable to perform to standard." "No judge wants to be the judge who sends a child home when the child gets hurt," said Callow, of the Berkeley, CA-based advocacy group. Callow said the bias against disabled parents is such that judges tend to grant custody to an able-bodied partner "even if they have a history that might usually be a heavy mark against them -- not having been in the child's life, a history of violence, etc."
Trais declined to comment to the Tribune when reached by phone. His attorney did not return repeated calls for comment. But Howard LeVine, a Tinley Park attorney not affiliated with the case, said Trais' concerns are legitimate and may hold legal weight. "Certainly, I sympathize with the mom, but assuming both parties are equal (in other respects), isn't the child obviously better off with the father?"
LeVine, who has specialized in divorce and custody cases for the last 40 years, pointed out that O'Neill would likely not be able to teach her son to write, paint or play ball. "What's the effect on the child -- feeling sorry for the mother and becoming the parent?"
On a recent morning, O'Neill's caretaker, Sasha Davidiuk, propped Aidan on a pillow in O'Neill's lap and O'Neill held her son. She has full use of her biceps muscles. When his bottle fell from his mouth, or tipped the wrong way, Davidiuk stepped in to reposition it.
The two worked in tandem, with Davidiuk heading up duties that require manual dexterity -- like changing diapers -- and O'Neill focused more on emotional engagement. When Aidan burst into tears, for example, O'Neill was the one to sooth him with a soft rendition of "Twinkle, Twinkle, Little Star."
In addition to Davidiuk, O'Neill's brother, an ex-Marine, lives in an apartment attached to her home. O'Neill's mother helps on weekends and the family keeps Pele, a yellow lab service dog, who can open doors, turn on lights and pick up stuffed animals.
Her immaculate, one-story home is filled with photos of Aidan. Her son's room, painted sherbet green and decorated with cheerful zoo animals, has a specially modified changing table and crib that allows for O'Neill's wheelchair. Read more.
NCIL Board Member Carol Jean Reynolds and Others Appointed to NCD
Today, President Barack Obama announced his intent to nominate the following individuals to the National Council on Disability:
Chair: Jonathan M. Young
Members: Carol Jean Reynolds, Fernando Torres-Gil, Chester Alonzo Finn, Gary Blumenthal, Sara Gelser, Ari Ne'eman, Dongwoo Joseph "Joe" Pak.
NCIL is very pleased with the administration's nomination of Carol Jean Reynolds, and we offer our most sincere congratulations to her. We very much look forward to the contributions she will make to NCD.
President Obama said, "I am grateful that these fine individuals have chosen to serve in my administration. They will bring a depth of experience and valued perspective to their roles, and I look forward to working with them in the months and years ahead."
Carol Jean Reynolds, Nominee for Member, National Council on Disability: Carol Jean Reynolds is the Executive Director of the Disability Center for Independent Living (DCIL) in Denver, Colorado. DCIL is a grassroots service and advocacy organization that assists over 700 consumers each year, providing four core services to individuals with both physical and mental disabilities: peer counseling, independent living skills training, advocacy, and referrals. Ms. Reynolds is a Member of the governing board of the National Council on Independent Living and serves as Co-Chairperson of its Mental Health Task Force. She was awarded Board Member and Consumer of the Year by the National Association of the Mentally Ill - Colorado. She is also a member of the Colorado State Rehabilitation Employment Council. Ms. Reynolds speaks publicly on mental health issues, including providing testimony to the Colorado State legislature in connection with legislation providing funding to uninsured individuals with mental health issues. Ms. Reynolds has struggled with and overcome several mental health and substance abuse issues and has been in recovery for 26 years. Read bios of the other nominees.
2009 Member Outcomes Deadline: Tomorrow, Showcase Your CIL or SILC!
Dear NCIL Members,
Please send NCIL one or two of your Center or SILC’s biggest accomplishments of 2009. We are collecting your outcomes for our upcoming Congressional Briefing and 2009 Annual Report. This is an excellent opportunity to showcase your organization and promote Independent Living nationally!
Please send accomplishments in the form of outcomes.
- Individual advocacy example: “Anytown Center for Independent Living transitioned 32 people from nursing homes and other institutions, saving the state and federal government $800,000.”
- Systems advocacy example: “Anytown Center for Independent Living removed 29 barriers in the transportation system in the city of Anytown, nearly 80% of those identified.”
Please keep submissions as concise as possible. Submit your accomplishments via email to eleanor@ncil.org by Wednesday, December 23, 2009. Thank you!
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December 22, 2009