Autism Insurance Update: Insurance Committee Hearing for H 498 Scheduled!

House Bill 498 that would require group insurance plans and the state health plan in North Carolina to cover treatment of autism is scheduled for a House Insurance Committee hearing on Tuesday May 14, 2013 at 1PM in room 1228/1327 of the Legislative Building. The House bill would ensure that plans for companies that operate in North Carolina and that are required to follow North Carolina insurance laws would cover diagnosis and treatment of autism, including applied behavioral therapy. Thirty-three states now have similar laws requiring autism insurance coverage. You can read Autism Society of North Carolina (ASNC) CEO Tracey Sheriff’s opinion piece about the law  as well as parent Beverly Moore’s op-ed. The Insurance Committee hearing is the first step in passing the bill in the NC House; if it receives a favorable report (majority vote yes to move it forward) it will likely go to an Appropriation Committee and then to the House floor for two votes. Once it passes the House, we move on to advocating for it to pass in the NC Senate.  It must pass both NC House and NC Senate chambers and be signed by the Governor to become law.

If you are signed up for ASNC’s monthly e-newsletter, and you live or work in one of the districts represented by a NC General Assembly House Insurance Committee member, you should already have gotten an alert from ASNC asking for your help. (If you have not updated your email address with us, please sign up so we can update your information.)

We are asking that constituents (meaning you live and or work in their legislative district) contact their own legislators who sit on the House Insurance Committee and ask for their support on H498. Please do not email or call every member of the Insurance Committee.

• Look up your NC House of Representatives Legislator using the district map (it is the one at the very top).
• Look up the list of Insurance Committee members to see if your Legislator is on the committee.
• If they are, please email or call and ask for their support on H498. Share a short version of your story about how autism has affected you, your family or those you care about.

If your NC General Assembly House Member does not sit on the Insurance Committee, you may still contact them to ask for their support. Look up your NC House of Representatives Legislator.

• Please look at the list of sponsors for H498 before you take any action.
• If your House member is a co-sponsor, you can thank them for their support on H 498 and ask that they continue that support throughout the process of getting the bill passed.
• If your House member is not a co-sponsor, ask that they support H 498 when it comes up for a vote.
• Share a short version of your story about how autism has affected you, your family or those you care about.

If you are considering  attending the House Insurance Committee hearing next Tuesday, you should know a few things before going to the Legislature:

• Your advocacy has helped us get to this point, regardless if you can attend that day or not.
  • Personal contact with your legislators in person, by phone, in letters and in emails is still the best way to be an effective advocate and we thank you for all your efforts on this issue and all the others that help those on the autism spectrum and their families.

• The day of the hearing is not a day to protest or to “storm the gates.”
  • Signs and posters are not allowed in the legislative building. While many of us are frustrated about the length of time it has taken to pass the bill in North Carolina, expressing that frustration will not help the cause. Respectful and courteous behavior, even in the face of disagreement over the issue, is the best way to represent our issues.

• The bill may or may not be heard the day it is put on the committee calendar.
  • Sometimes bills get put on the committee’s agenda, but get moved to another day. This is normal during busy legislative weeks and does not mean there is no support for the bill or that the bill will not pass.

• Room 1228/1327 where the House Insurance Committee meets is a small narrow room in the legislative building with about 80 seats in the audience.
  • It will be crowded with legislators, staff, reporters, lobbyists, and other people interested in this bill and in other bills on the agenda. Please be sure to make arrangements for childcare as this is not a good day to bring your child(ren).

• The audience at the committee meeting *will not* be invited to speak about the bill.
  • In fact, audiences at the legislature cannot clap, shout, or otherwise comment loudly on the proceedings. Your opportunity to speak to your legislators about the bill comes before or after the meeting. If you want to try and arrange a meeting, please contact Jennifer Mahan at the Autism Society of NC or contact your legislator directly. Please know you may not be able to get a confirmed meeting at the last minute and meetings frequently change.

• The Insurance Committee room has bad sound.
  • You may have difficulty hearing the questions or responses because the room is not set up well for sound. Legislators at the front of the room can hear each other and hear the presenters, but there may be times when you cannot hear.

• Legislators are not experts in autism.
  • You have done a lot to educate them about autism over the last few years (and decades) but they may ask questions or make comments that surprise you. The speakers may or may not fully address the issues in the short time to discuss the bill. This is an opportunity to continue to educate people after the meetings.

• Please look at the Legislative website citizen’s guide and other information about the downtown area in order to locate the building and public parking.
  • Parking sometimes fills up during the day because the Legislative building is located near several museums. Most public lots are two dollars an hour or more for parking and take credit and cash. Please be sure to park legally – Raleigh tickets and tows regularly.

Reminder: The NC General Assembly (NC House and NC Senate) is responsible for passing laws in North Carolina. Congress (which also has a House and a Senate) passes laws for the entire country, including North Carolina. Some insurance plans, such as those for those for multi-state or multi-national companies, those that are self-funded, and those for Federal employees, are the responsibility of the Federal Government and Congress. The NC General Assembly cannot pass legislation changing those insurance requirements. If you have questions about who represents you in the General Assembly or in Congress, or questions about this or any public policy issue, please contact Jennifer Mahan, Director of Advocacy and Public Policy at the Autism Society of North Carolina. Or you can post your questions in the comments section below.

Legislative Long Session Kicks Off! What Might the Session Hold For People on the Spectrum?

This week marks the beginning of the North Carolina General Assembly long session, which typically lasts from the end of January to sometime in June/July.  Lawmakers arrived for work in Raleigh over the last two weeks and began organizing for the session, with new legislators receiving training.  There are a LOT of new folks – of the 170 legislators, 80 are serving in their first or second term.  They began hearing bills starting on January 31, and already leadership in the House and Senate have been discussing policy priorities, prior to bills being filed. We are likely to see proposals for tax reforms, changes to education, voter identification, overhauling unemployment compensation and reigning in Medicaid.

The Autism Society of North Carolina has its own set of public policy targets. These targets promote public policies that enhance the lives of individuals on the autism spectrum and their families. The targets are updated each year based on community feedback.  Though we work to promote these targets with our legislators, some issues get more attention than others in any given year. With the stated priorities of this new General Assembly, what might the session hold for those with Autism Spectrum Disorder?

1. Raising Autism Insurance Standards: The Autism Society of North Carolina, working in partnership with Autism Speaks, has been meeting with legislative leadership to encourage the state to adopt better insurance standards for those with autism. Expect legislation on insurance to be filed this session and to move forward through the committee process.
2. Expanded Opportunities for Children on the Spectrum to Attend Non-Public Schools: Legislation passed two sessions ago gave some families of children with disabilities a tax credit for moving to home schools or private schools.  As part of education reforms, legislators are looking at scholarship programs that would open this opportunity to more families and make the program easier to use.
3. Protections for People with Disabilities to Exercise Their Rights to Vote: Voter identification laws can have the unintended consequence of making it more difficult for people with disabilities, including those on the autism spectrum, to exercise their voting rights. Because some people do not drive, or have limited funds, or have difficulty getting needed paperwork to access photo identification, expect that lawmakers will make adjustments to voter ID proposals to accommodate people with disabilities. [Questions about voting rights? Disability Rights NC has an info page here.]
4. Changes to Medicaid: It’s difficult to predict what lawmakers will do with North Carolina’s Medicaid system, a $13 billion set of programs that provide health care and supportive services to people with disabilities, including those on CAP and Innovations. The Autism Society of North Carolina continues to emphasize the benefits of Medicaid services in assisting people to be able to live and participate in their communities. We hope lawmakers will see these programs as effective investments in communities for those on the autism spectrum, though it is looking more likely that lawmakers will not expand Medicaid this year to cover an estimated 500,000 low income people, including those with disabilities trying to return to work.
5. A Short Term and Long Term Fix for “The Group Home Problem:” Language changes in the last days of the budget process in 2012 left group homes for people with developmental disabilities and mental illness without the ability to access funds to keep operating after the legislature made changes to who could receive personal care services. One of the first bills passed this session, House Bill 5, makes sure those homes can remain funded through the end of the fiscal year. The bill now moves to the Senate. Proposals for a long term fix for group homes, adult care homes, and special care units will likely be up for discussion in the coming months.
6. The Budget: Numerous programs that are used by people with autism and their families are funded by the state’s budget – everything from special education services in schools, to  Medicaid waiver one-on-one supports, to state developmental disability center crisis programs. Over the last few years NC has cut funds for programs that served people who do not qualify for Medicaid, as well as frozen spending for Medicaid waiver programs, a trend that has left thousands on waiting lists for help. The new Governor will propose his budget priorities this spring.  Then the NC Senate will develop the first budget bill this year, with the House responding with their budget bill. ASNC will report more specific news on the budget once appropriations committees begin meeting and talking.

What can you do?

1. Stay Informed: Subscribe to the ASNC blog, sign up for our e-newsletters and alerts.
2. Talk to Your  Legislator: You can write, email, call, or visit. ASNC encourages you to share your story about autism spectrum disorder, how it affects you, your family or those you care about. We have tips for making that contact and we are glad to help you or your local chapter set up a meeting with your state legislators. You can find out who represents you here.
3. Respond to Calls for Action: Periodically ASNC will ask those in our network to respond with action. We don’t ask often, so when we do, you know we really need your help!

If you have questions about these issues, or other public policy issues for people on the autism spectrum and their families, please contact Jennifer Mahan, Director of Advocacy and Public Policy at 919-865-5068 or at jmahan@autismsociety-nc.org. if you need one-on-one advocacy help from one of our Parent Advocates,  please see the map to find those for your region. To connect with other parents, find a local Chapter or Support Group.

Coalition Rally 2012

Mark your calendars now and join The Autism Society of North Carolina (ASNC) at the for the 2011 Coalition Popcorn Rally and Advocacy Day at the NC General Assembly on May 22nd from 8:30 am to 3:00 pm.  The Autism Society of North Carolina is a long time member of The Coalition, a group of 40 statewide organizations advocating on behalf of individuals with developmental disabilities, mental health issues, and the disease of addiction.  Telling legislators our stories is our most powerful advocacy tool.  Join us in making the concerns and presence of the autism community known to each NC State Senator and Representative.

Registration will begin at 8:30 Am and continue throughout the day on the back portico of the Legislative Building, located at 16 W. Jones Street.  During the morning hours Coalition volunteers, including ASNC’s Director of Government Relations Jennifer Mahan will be providing brief training on making the most of your Legislative visits and current issues impacting people with disabilities. There will be opportunities to listen in on Legislative Committee meetings and Legislative session throughout the day and The Coalition will be handing out popcorn starting at 11AM, with the Rally starting at Noon. If you plan to addend, we encourage you to make an appointment with your Legislators for May 22 as soon as possible. You can reach your NC state Legislator by calling the General Assembly switchboard at 919-733-7928 and you can find out who represents you via the General Assembly website.

ASNC would love to know that you are attending to we can assist you with talking points related to autism spectrum disorder and any questions you might have. Though registration is not required, please contact Jennifer Mahan at ASNC at jmahan@autismsociety-nc.org or call 919-865-5068 to sign up for our special ASNC Coalition Rally emailing list or for additional information.

[For those attending, a map of the Legislative Buildings and local parking can be found here.  Please note that there is a new parking lot located at Edenton and  McDowell Streets, near the old Education building and attached to the "green" building with the giant globe. Parking in downtown lots is NOT free. The Legislative buildings have several snack bars and a cafeteria and nearby Fayetteville street has a number of restaurants. ]

NC General Assembly Legislative Session Wrap-up

This article was published in The Autism Society of North Carolina’s summer 2011 issue of The Spectrum. Current and past issues of The Spectrum can be found under Publications on our website.

Families, self-advocates and ASNC faced difficult challenges in advocating for better services and supports for people on the autism spectrum as we headed into the long North Carolina General Assembly legislative session in January: ongoing tough economic times with a 2.2 billion dollar state budget deficit, new legislators unfamiliar with our needs, pressure from interest groups opposed to policy changes, and a determination across state government to use managed care for services to those with developmental disabilities.  ASNC pushed policymakers to think about the effects their decisions would have today and in the future. While we did not achieve all we set out to do, we were able to have some significant impacts.

 

Budget: At the beginning of the year, policymakers were expecting to make large cuts to all programs, including those that serve developmental disabilities. By the end, suggested cuts had been significantly reduced.  Most cuts to Medicaid we hope will come from efficiencies, connecting people to primary care services and better management tools. Cuts to state service funds were reduced to a $20 million onetime cut from a recurring $30 million cut.  Cuts to non-profit programs went from $ 10 million down to $ 5 million. Still, there will be significant impact; service providers have taken rate cuts for the last three years, despite needing to meet increasing quality standards and rising costs. Any reductions in a system that already struggles with waiting lists will likely come at the cost of people losing access to needed services and supports.

 

Other programs impacting children took deep cuts: Schools were cut by 408 million; early childhood education and development were cut by more than $55 million. Additionally, evidence backed programs like Smart Start will no longer be able to promote health screenings that help with early identification of children at risk for development problems.   ASNC pushed for legislators to take a balanced approach and keep current revenue streams in place to support these needed programs. Despite public support, legislators allowed the penny sales tax to sunset on June 30th.

 

Managed Care Waivers:  ASNC has made it a priority to advocate for I/DD system management options other than 1915 b/c managed care waivers for people with Autism Spectrum Disorder. Of greatest concern under managed care is the elimination of independent case management which creates a conflict of interest in managing the use of services (i.e. the cost of care) and determining an individual’s needs and plan of care. As the session progressed, it became clear that policymakers were determined to push managed care across the entire system.  ASNC pushed for additional consumer protections and for the voice of families, self advocates and local communities to be heard in the process.  Please see page 16 for expanded information about the new managed care waivers in North Carolina.

 

Autism Insurance Coverage:  Autism insurance bill sponsors introduced very good bills this year, Senate Bill 115 and House Bill 826, Coverage for Treatment of Autism Disorders. This bill ensure that North Carolina health plans cover services for ASD, so it’s disappointing that autism insurance legislation has not moved forward in the NC General Assembly this session. We all know it’s the right thing to do, so that those with autism get the services they need to be healthy and successful. We also know that it will save money in the long run by promoting independence.

Unfortunately, to get it passed, we need to convince NC General Assembly lawmakers to raise insurance standards in both private and public health plans, which is estimated to increase costs less than 1%. At this time, many lawmakers are against taking actions which would result in higher costs to business or state health plans. This is not the only reason that autism insurance bills have not passed, but it is a huge factor. Other factors include a lack of understanding about Autism Spectrum Disorder and its treatments, as well as opposition from powerful interests like the insurance industry and business associations.

 

The bill is still alive and will carry over to the short Legislative session in May-June of 2012. Between now and then, families, self-advocates, autism professionals, and other advocacy organizations must meet with their NC state General Assembly Legislators, especially those on the House Health and Human Services Committee, the House Insurance Committee, and the Senate Insurance Committee, to urge those lawmakers to pass the bill. 

 

Tax Credits and Corporal Punishment: Autism advocates had two solid victories this past session: House Bill 344, Tax Credits for Children with Disabilities, and Senate Bill 498, Modify Law Re: Corporal Punishment.  House Bill 344 Tax Credits for Children with Disabilities gives a $6,000 tax credit to families whose child with a disability moves from a public school to attend a private school or home school. To qualify for the credit, children must have been in a public school the previous two semesters, have an IEP, and be receiving special education or related services on a daily basis. The legislation also establishes a special needs trust fund to be administered by the NC Department of Education to supplement funding for special education services in the public schools. Part of the savings generated by the use of the tax credit will go to the trust.

 

Senate Bill 498, Modify Law Re: Corporal Punishment, requires schools to send a form at the beginning of the school year allowing parents to opt-out of corporal punishment for their children.  Many families are surprised to learn that 39 counties in North Carolina still allow physical punishment and that 17 are actively using it (Numbers are correct as of this printing. Counties are moving to ban the practice and this number may drop as we get closer to the school year start.) ASNC continues to promote positive behavioral supports and an end of the use of physical punishment for all children in schools. Previously, corporal punishment had been banned for students with disabilities; however, we know from parents that students with as yet unidentified disabilities continue to be subject to corporal punishment.

 

Your Advocacy: One of the best outcomes of this legislative session is that we heard that Legislators heard from you.  On managed care, on the budget, on education, on insurance – they got your calls, letters and emails.  Having real life examples of how Autism Spectrum Disorder is impacting you and your family does make a difference in public policy. ASNC needs that advocacy to continue to build so that every Legislator hears from families, self-advocates, and others in their districts.

 

Victories on autism insurance, funding for services, ending waiting lists, and creating lifetime supports will be won with your action. Policymakers were moved by your stories about struggling to find the right education options to ensure your child’s success. That same action is needed in the coming year to pass better insurance standards. ASNC challenges you not only to get involved, but to ask others who know you to join in this effort. Sign up for our e-updates, write letters, and pass them along to your neighbors with the request that they do the same.  

 Please contact Jennifer Mahan, Director of Government Relations, with questions or concerns. She can be reached at 919-865-5068, 1-800-442-2762, ext. 1116 or jmahan@autismsociety-nc.org. You can also leave your questions or comments in the comment section below.

Tax Credits for Children with Disabilities: NC House Bill 344

 

[The Autism Society of North Carolina now has a comprehensive fact sheet on HB 344 Education Tax Credit for Children with Disabilities on its website here.]  

Thursday June 30^th 2011 House Bill 344 Tax Credits for Children with Disabilities  became law in North Carolina. Starting this year, families will be able to claim a tax credit for moving their child with a disability from a public school to a private school or home school setting. The Autism Society of North Carolina (ASNC) is already getting a lot of questions about the tax credit, how it will work and who will qualify.  If you have questions that are not answered in the post below, please add them in the comments or contact Jennifer Mahan, Director of Government Relations at ASNC, at jmahan@autismsociety-nc.org .  

Tax Credits for Children with Disabilities gives a $6,000 tax credit ($3,000 per semester) to families whose child with a disability moves from a public school to attending a private school or home school. To qualify for the credit, children must have been in a public school the previous two semesters or if in pre-school have been receiving special education services through the public school, have an individual education plan and have been receiving special education or related services on a daily basis.  Children must be re-evaluated by the public schools every three years to continue to qualify for the credit.  Children may qualify through high school, up to the age of 22; the credit does not count for college education.

In a unique arrangement, the legislation also establishes a special needs trust fund to be administered by the NC Department of Education to supplement funding for special education services in the public schools.   Since the amount of the tax credit is less than the average cost of educating a child with a disability in public schools, the tax credit saves the state of North Carolina money. Part of these savings will be retained by the special needs trust, part will go back to the state of NC’s general fund and part will be used to fund the tax credit.  

Because private schools are not required by law to provide educational services to children with disabilities, we urge parents to select private schools carefully. Make sure they understand your child’s unique needs and a ready to provide the support for them to be successful.  Some private schools are already working with children on the spectrum. Check with other parents to see what their experiences have been like.

 

Frequently Asked Questions:

Q: When can I start to claim this tax credit?

A: If the child moves to private school this fall semester, taxpayers can start to claim a one semester tax credit, the cost of tuition and/or special education  related services up to $3,000, when they do their 2011 taxes next year. In years following, the taxpayer can claim a credit based on the number of semesters the child attends private school in that tax year.

Q: Is the tax credit for any services for my child with a disability?

A: The tax credit is for education purposes; private school tuition costs and related educational services. It’s not a general child with a disability credit.

Q: Can I claim this credit on my taxes if my child is already in a private school or being home schooled?

A: Currently, to initially qualify for the credit, the child must have been in a public school for the previous two semesters.

Q:  Is there a list of schools where the tuition is close to the$ 6,000 credit?

A: Since the law just passed, we have not yet seen a list of schools where tuition is near $6,000. As we get this information, ASNC will do our best to share it with families.

Q: If another person, like a grandparent, is paying for my child’s tuition, can they claim the credit?

A: The person who claims the child as a dependent on their taxes must be the one to claim the tax credit.

Note: Please be sure to check with a tax professional if you have questions about the use of this or any other tax credit.