While the House of Representatives did not vote on the American Health Care Act (AHCA) as expected on March 24, due to a lack of enough votes for passage, negotiations continue regarding a modified bill with even more concerning proposals. TheApril 10th NDSC action alertoutlines our serious concerns, especially for people with disabilities who use Medicaid for employment, home, and community supports. The alert tells you how to contact your Members of Congress and suggests what to say. NDSC policy staff continue to meet with Members and staff in coalition with other national organizations. However, the most effective advocacy comes from you – the constituents — about how this bill will affect you and your family. Please continue your calls and visits!
Several self-advocates have shared with us what they are saying to their Members of Congress to save the Medicaid supports that would be jeopardized by the AHCA. Jamie Veerhoff states, “I want independence and I need Medicaid money for counselors so I can live like everyone else.” Eli Lewis talks about his job and says, “Without my Medicaid waiver services, I won’t grow in my job and become more independent.” Eli’s roommate, Steve Sabia, tells Members, “Without my Medicaid waiver services, I may not be able to get a paid job, keep a job and become more independent in my apartment” (Eli and Steve pictured right).
Visit our page on the NDSC website and click on “Self-Advocates in Action” to read their full statements. If you are a self-advocate and are thinking about what to say, these statements will give you some good ideas.
New ABLE Act Bills Introduced
On April 5th, three bills were introduced to enhance the benefits of the Stephen Beck Jr. Achieving a Better Life Experience Act (ABLE). The co-sponsors of these bipartisan bills are Senators Bob Casey (D-PA), Richard Burr (R-NC), Jerry Moran (R-KA), and Chris Van Hollen (D-MD) and Representatives Pete Sessions (R-Texas), Cathy McMorris Rodgers (R-Wash.), Tony Cardenas (D–Calif.) and Mike Doyle (D-Pa.). This package of bills include:
Beneficiaries would still be subject to the caps related to earned income and substantial gainful employment (SGA) under Social Security rules for Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). For more information, visit the ABLE National Resource Center. NDSC supports all three new ABLE bills.
Telling YOUR personal story, connected to a policy objective, is the best way to help Members of Congress understand the impact of policy on their constituents. Brad Pitzele shared this note to a Member of Congress with us (the Pitzele family, pictured left):
“This December, we opened Brianna her own ABLE account and we are contributing to it monthly, just like we do for Tyler and Abigail’s 529 plans. Brianna has some money in a 529 plan that I mistakenly invested when she was born. I wanted to make a statement to the world that she would be going to college. Unfortunately, I did not realize at the time I might be punishing her by causing her to lose future benefits. I am looking forward to the passage of the ABLE Financial Planning bill (H.R. 1897) to allow us to roll that over.”
Advances in UDL Implementation
State Department of Education personnel and other state education leaders met in late March at the National UDL Implementation and Research Network (UDL-IRN) Summit to learn more about the implementation of Universal Design for Learning (UDL). NDSC’s Ricki Sabia was a speaker in a four-hour presentation on the intersection of UDL and the Every Student Succeeds Act (ESSA). States were encouraged by the speakers to include UDL in their ESSA state plans to help provide all children, including students with disabilities, with a significant opportunity for a fair, equitable and high-quality education, which is the purpose of the law.
NDSC is also helping the UDL-IRN and CAST (www.udlcenter.org) in an exciting new project to develop UDL credentials and certifications to ensure that UDL is being implemented properly. Credentialing and certification will recognize best practices in education program design, product development, and classroom instruction. For more information on this project, and to sign up for the listserv, go to http://www.udlcci.org/.
What’s New in Inclusive Higher Education?
NDSC advocates to expand inclusive higher education opportunities for students with intellectual disabilities (ID). One of the most important priories in this area is funding to develop programs and to support individual students.
Madison’s Advocacy Story: Madison Essig was the first student with Down syndrome to graduate from the Washington DC public schools with a full diploma. She is now a student at George Mason University in Fairfax, Virginia and participates in the Mason LIFE program for students with ID. Madison and her mother, Kimberly Templeton (pictured together, right), have made a real difference for other students in Washington DC through their successful advocacy to allow DC Tuition Assistance Grants (DCTAG) to be used for higher education programs for students with ID.
DCTAG is intended to defray the cost of college for Washington DC residents, who don’t have access to a strong in-state university system. Available to all DC students from families who have household incomes below $1 million a year, it provides as much as $50,000 over the course of college for students to attend eligible higher education institutions: public universities outside the city, private schools in the DC region, and historically Black colleges.
Madison’s application was initially approved for a DCTAG annual grant of $10,000. However, when DCTAG learned that Madison was enrolled in the Mason LIFE program, her award was rescinded. Madison and Kimberly successfully appealed that decision. After several months of advocacy, Madison was “deemed an eligible student attending an eligible program for DCTAG purposes.” This decision now paves the way for other Washington DC students with ID!
Ruby’s Rainbow application deadline nears: Ruby’s Rainbow provides scholarships of up to $4,000 to individuals with Down syndrome seeking higher education or post-secondary enrichment classes. Don’t miss out – the application deadline is April 28, 2017. Visit their website for information on how to apply and to learn about the scholarship recipients.
New Accreditation Workgroup kicks off: The National Coordinating Center Accreditation Workgroup, chaired by NDSC’s Stephanie Smith Lee, recently published the Report on Model Accreditation Standards for Higher Education Programs for Students with Intellectual Disability: A Path to Education, Employment, and Community Living. Click here for a copy of the report. NDSC self-advocates, families and professionals provided input into the model accreditation standards for higher education programs at NDSC conventions and through surveys. A new Workgroup held their first in-person meeting and has started work on a five-year project to field-test the model standards, research areas such as student learning outcomes and credentialing, and update as needed. NDSC is once again involved in providing input to this work.
Governmental Affairs Action Alert – April 10, 2017
Action is needed during the Congressional recess (April 10-21) on the American Health Care Act (AHCA)!
This is the bill that proposes to gut the Medicaid program through per capita caps and block grants and repeal many provisions of the Affordable Care Act that are critically important to people with disabilities. Congressional leaders canceled a vote on March 24th in the House of Representatives on H.R. 1628, the American Health Care Reform Act (AHCA). However, Members of the House of Representatives and the Administration are renewing talks on the AHCA and proposing harmful changes to gain enough support for passage of this dangerous bill.
BACKGROUND: The AHCA repeals major provisions of the Affordable Care Act, and makes devastating cuts to Medicaid. This bill cuts $880 billion out of the Medicaid program over ten years. Under the cap and cut proposal, the federal government would no longer share in the costs of providing health care services and community services beyond the capped amount. It weakens Medicaid by ending the Medicaid expansion earlier than planned and offering Medicaid block grants to states.
These changes would likely result in drastic cuts to the employment supports provided through Long-Term Services and Supports (LTSS) and to services through the Home and the Community-Based Services (HCBS) program, because these are optional services that states are not required to provide. HCBS is the program that includes important support services for people with Down syndrome and other disabilities – support services that help people live in their own homes (i.e., scheduling appointments, grocery shopping, running errands, getting to work on time, aiding in day to day living tasks).
The latest proposal makes a bad bill even worse, particularly for people with pre-existing health conditions, by allowing states to waive the requirement to offer “essential health benefits” and to waive insurance pricing requirements so that those with pre-existing conditions could be charged prohibitively high rates.
What you can do:
Make an appointment and visit your Senators and Representative or their staff in their state/district offices.
Attend a Town Hall or other event.
Use #ProtectMedicaid on social media.
Keep up the calls! Members of the House of Representatives need to keep hearing from families. Visit http://whoismyrepresentative.com for contact information.
Tell them that you are a constituent and your personal story. Tell them that you/your son/daughter relies on (or will rely on) Medicaid for health insurance and for services to live and work in the community through the Medicaid waiver.
Caps and block grants would decimate the program on which people with disabilities and seniors rely for critical healthcare and community services.
Do NOT allow states to opt out of requiring health plans to cover basic health care and keep it affordable for people with pre-existing conditions, including people with disabilities.
Registration for the 2017 NDSC Convention in Sacramento, CA is about to open AND it’s MOBILE ready! So pull out those smartphones and tablets and get ready to “Live the Dream” with the NDSC in Sacramento this July.
If you didn’t have a chance before now, you should review our ‘Please Read Before You Register’ post first. For those of you who have attended the convention before, you’ll log in to your account and get started. Forgot your user id or password? No problem, just follow the prompts from the login screen to have that sent to you. If you have not registered before, you’ll need to create an account before getting started. Online registration has never been more easy or convenient, click here to get started!
NEW CONVENTION SCHEDULE
Be sure to check out the NEW Convention Schedule before you make your travel plans. Convention programming will begin late Thursday afternoon and conclude at noon on Sunday. Trust us, you won’t want to miss anything by arriving late or leaving early.
For seasoned NDSC attendees, these convention programs are old hat…or are they? Make sure to check out our website for the full pre-conference session lineup before you register. With 9 amazing sessions to choose from, you can’t go wrong. The topics might be familiar but each speaker is new to the NDSC pre-con lineup this year. The NDSC Exhibit Floor will also have a few new features like cash concessions for lunch and dinner, a free welcome reception for all attendees on Thursday night, and new and improved exhibit hours. Finally, the traditional awards banquet will be replaced by the 45th anniversary Sapphire Celebration. This is a ticketed event and is expected to sell-out, so don’t miss the chance to be a part of a very special anniversary celebration featuring live performances, music, and of course, dancing!
BEFORE YOU PAY, CHECK TO SEE THAT YOU’VE INCLUDED EVERYONE
Make sure your confirmation screen has all of the registrants, conferences, and options you selected during registration before you check out. Once your registration has been paid you will not be able to go back to add family members, pre-cons, sapphire celebration tickets, t-shirts, etc. If you do find that you need to make adjustments, you will need to call the NDSC center. We will be experiencing high call volumes this week. If you don’t get through, please leave a voicemail and we will respond in the order which calls are received.
The NDSC has a block of rooms reserved for convention attendees at the Residence Inn, the Sheraton Grande, and the Hyatt Regency. All three properties are within walking distance to the Sacramento Convention Center. Click here to see which hotel is best for your family. Keep in mind, before you can reserve your room, you must register for the convention. Your convention registration ID will be required when booking. Rooms are available on a first-come, first-served basis and won’t last long. Attendees may book one room per convention registration. Families needing more than one room must have multiple registrations completed.
SOUVENIR JOURNAL MESSAGES AVAILABLE
The Souvenir Journal is the official program for the convention weekend. Placing a message in the program is a great way to support the NDSC, advertise your business or just brag about yourself. Messages start at just $75. Premium spaces are available this year, click here for more details.
We feel the excitement building as April 10th approaches and families can finally register for the 2017 NDSC Annual Convention! We also know families are anxious to make hotel reservations. As was the case last year, convention registration is required before families can reserve their rooms. We strongly recommend reading over the following information NOW, so that on April 10th you are informed and prepared to complete your family’s registration.
First – do you have your username (account holder email) and password handy from last year to login into the registration system? If you are a first-time attendee, you’ll need to create an account before you get started. You might also want to watch this online tutorial about the registration process. The system has been made “mobile-ready” this year, so you can register from your tablet or smartphone, as well as a computer.
Next – Once you are logged into the system, you can begin registering each member of your family for whichever program they are attending. Remember you will have to “add a person” for EACH person you are registering.
It’s best to start with anyone who is attending the general convention. This means anyone in your immediate family wanting to attend workshops, receptions, sharing sessions, exhibitors and the film festival too! After you get each person registered for the general convention, you’ll want to consider selecting a pre-conference session to attend. These sessions are an additional fee and have to be pre-selected when you register. Pre-conferences are amazing opportunities to dive deeper into one topic presented by world-renowned experts.
Once you have all of the general convention attendees registered and pre-cons selected, you can move on to the other conferences: Youth & Adults, Brothers & Sisters and Kids’ Camp.
The Youth & Adults Conference is for self-advocates with Down syndrome, ages 15 and up. In order to provide appropriate support for those attending, there are a number of questions that need to be answered during registration. You will also be asked to select your self-advocate’s programming choice for Sunday. Sunday is the always-popular talent show; however, there are specialized workshops offered during that time for those who prefer not to watch the show or participate in it. We strongly recommend discussing these choices with your self-advocate before you register. Click here for the list of questions asked during registration as well as the Sunday programming options. If your self-advocate is bringing a volunteer to support them throughout the conference weekend, make sure that volunteer registers as a 3-day Y&A volunteer and indicates the self-advocate they are supporting.
The Brothers & Sisters Conference is for rising 4th grade thru 12th grade siblings. The conference is led by college-aged siblings and provides a variety of activities and learning throughout the weekend. Programming for this conference will take place at the Hyatt Regency Hotel. Siblings will go off-site on Sunday to a Sacramento-area attraction. You’ll need to know your child’s t-shirt size when registering.
Kids’ Camp was created for children 6 months to 10 years without DS and up to 14 years with DS. It is broken into 5 separate sessions. You must select and register for each session you want for each child. Some families like to review the workshop schedule prior to selecting Kids’ Camp sessions (keep in mind, this schedule is subject to change). We recommend reviewing the Kids’ Camp FAQ’s and other information about this program. You’ll also need to provide your child’s t-shirt size when registering.
Now that you have your whole family registered for one conference or another. You’ll want to consider some the following convention options.
Compendium Format – Flash Drive is complimentary; Paper Copy can be purchased