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.

Autism Insurance Legislation Introduced in North Carolina!

 

North Carolina General Assembly Representatives Chuck McGrady, Tom Murry, Phil Sheppard and Trisha Cotham have introduced NC House Bill 498, titled “Mandate Autism Health Coverage.” The bill would ensure that health benefits plans in North Carolina will provide coverage for diagnostic and treatment services for Autism Spectrum Disorders in individuals in private and state health plans that are covered by North Carolina insurance law. HB 498 has been referred to the House Committee on Insurance, then if the bill receives a favorable report (they vote yes) the bill moves on to the next committee. The procedure is that bill must be heard in those committee and voted on favorably to be considered on the House floor.

We all know it’s the right thing to do, making sure that children 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 and less disability. North Carolina should join the other 32 states who now have coverage for autism spectrum disorder!

ACTION: The Autism Society of North Carolina is following this legislation closely and actively working to see it passed, but we need your help to make it happen. More and more Legislators are aware of autism, its impact and the need to address the issue even when they don’t completely understand autism spectrum disorder or the services and treatments. You can tell them that insurance coverage is something they can do to help and ask that they pass House Bill 498. Check the bill page and see if your General Assembly House member has put their name on as a sponsor or co-sponsor. Legislative districts changed last year so please be sure to check who represents you currently.

• If your NC House Representative has sponsored or co-sponsored, please call, email or write them a note thanking them for their support. This is a good time to let them know how much this means to you, your child, those you care about or those you serve 

• If your NC House Representative was not a sponsor it’s still important to educate them about this bill.  Tell them how much insurance coverage would mean to you and others who care about someone on the autism spectrum and that its time that North Carolina joined the other 32 states with insurance coverage laws.

If you have questions about this public policy issue or others affecting autism, please contact Jennifer Mahan, Director of Government Relations, Autism Society of North Carolina, 919-965-5068 or jmahan@autismsociety-nc.org.

Public Policy Update: Governor’s Budget, Education Scholarships, and Group Home Fix

 

 

 

The Autism Society of North Carolina advocates on public policy issues, monitors activities of the General Assembly and works to inform you about how these issue might affect people on the autism spectrum. If you have questions about these or other policy issues, please post your questions below or contact Jennifer Mahan, Director of Advocacy and Public Policy at 19-865-5068 or jmahan@autismsociety-nc.org. 

Governor Releases Budget Proposal

Governor Pat McCrory released his state budget proposal on March 20^th, in what will be the first step in a lengthy process to develop a state budget for the 2013-2015 biennium. Legislators had the opportunity to hear from the Governor’s budget staff March 21st about the proposal and to ask questions in a Joint Appropriations Committee meeting. The next step is for the NC Senate to develop their budget legislation, which does not need to be based on the governor’s proposal. More information on how the budget process works in North Carolina can be found at the end of the news article here.

The Governor’s budget overall maintains services and supports to individuals on the autism spectrum and those with other developmental disabilities; there are no major cuts to Medicaid and no major cuts to the Division of Mental Health, Developmental Disabilities and Substance Abuse Services.  Medicaid funding is increased to allow for growth in the number of people who will access the program due to changes with the Affordable care Act in 2014. A first reading of the 1300-page document reveals the biggest concerns for disability advocates to be:  1) a prior authorization requirement for obtaining mental health medications under Medicaid; in other states this has kept people with mental health conditions from getting needed medications and 2) the elimination of 3200 teacher assistants in 2^nd and 3^rd grades, and the lowering of the ratio of TAs to students in K-1, to pay for 1800 more teachers to address school enrollment growth.  Since many children with disabilities are now in mainstream classrooms, fewer teacher assistants in those grades could mean less assistance for kids with Individual Education Plans (IEPs) or 504 plans since teaching assistants often provide that additional support. Local school districts would have the flexibility to determine how those funds would be used, so it is not entirely clear what the impact of shifting those funds from TAs to teachers would be.

Education Scholarship for Students with Special Needs Would Replace Tax Credit

Representative Paul Stam, the original sponsor of the education tax credit for children with special needs, has introduced new legislation to change the tax credit into a scholarship program, House Bill 269.

This program is nearly identical to the tax credit program, assisting families who move their child with a significant disability out of the public school system and into a private or home school, with a few differences: 1) it would open the program to a wider array of income levels since it is not dependent on a family’s tax liability 2) it would grandfather into eligibility those currently eligible for the tax credit 3) it would include the provision that was intended to go into effect for the tax credit next year, requiring only one semester of public school in North Carolina to be eligible (the current criteria is two semesters) 4) it would be a set amount of money, $3000 per semester, unlike the variability of a tax credit.

The Autism Society of North Carolina worked to pass the tax credit bill and believes this bill is a positive change that will carry similar benefits to families and children as the previous law.

Since it uses scholarships, the new program would have a limited amount of funding, $3 million to start, so individuals would need to apply yearly for the funding (those currently getting a scholarship appear to have some priority in accessing the scholarships). However, given the above changes, we believe that the program will attract more families than the current tax credit since it is easier to use and available to all income levels. Rep. Stam intends for this program to be permanent, but of course the legislature cannot obligate future legislatures so there are no absolute guarantees.   Just like the tax credit, these scholarships would not be available to people who took their child with special needs out of public school prior to June of 2011 when the original tax credit bill passed. This will disappoint some parents who were hoping that legislation would eventually expand to include them – they have a good argument for more funding to support additional families and ASNC would continue to work with them to advocate for their position.  This is a good time to find an alternative to the tax credit as we expect major tax reforms are coming, either this year or next, and this tax credit could be lost.

ACTION: Please contact your North Carolina legislator and express your support for the scholarship program for children with special needs. If you believe the scholarship program would not cover your child due to limits in the eligibility criteria, state your belief that the program should be expanded to include your child.  NC House and NC Senate legislative voting districts changed this year, so you should check to see which district you are in and who currently represents you in the General Assembly on the new easy to use district map page.

Temporary Fix for Group Funding Problems Enacted

On March 6^th Governor Pat McCrory signed House Bill 5, Temporary Funding /Group Homes and Special Care Centers. This temporary fix to the Personal Care Services and group home crisis will allow group homes whose residents have been denied Personal Care Services to access special funding through June 30^th, 2013. This funding will keep the group homes operating and their residents cared for in the short-term. Governor McCrory, Speaker Thom Tillis, President Pro Tem Phil Berger, Senators Ralph Hise and Louis Pate, as well as Representatives Marilyn Avila, Justin Burr, Nelson Dollar, and all deserve thanks, along with the other bill sponsors and General Assembly members for their role in getting this bill passed quickly.

Since this is a temporary fix, the legislature must get a long-term fix in place before the temporary funding expires at the end of June. For the past several years, the intellectual and developmental disabilities (IDD) advocacy community, including the Autism Society of North Carolina, has been working on a proposal that serves as a long-term fix by allowing Medicaid funds to be used for support services in community settings using the “1915i option.” This “i” option offers an excellent opportunity to create a stable future for these individuals with IDD living in group homes, and thousands of others in other community settings.

Public Policy News and Action: Group Home Bill Moves, No Medicaid Expansion, Federal ABLE Act Reintroduced, Federal Regs Leave Out ABA

This policy update contains both an update on the North Carolina General Assembly (state laws) as well as actions by the US Congress and federal regulators (federal laws).

North Carolina General Assembly Update

Group Home Bill Moves

House Bill 5, which would extend temporary funding to residents of group homes who no longer qualify for personal care services, passed the Senate and returns to the House where they are expected to concur. The Senate committee amended the bill so that the funding also extends to residents of special care units, who assist people with dementia. In addition, the new version of the bill would clarify several dates and make technical language changes. This bill is not a permanent fix to the problem, as the funding will end June 30^th. The Autism Society of North Carolina (ASNC) is hopeful that the General Assembly will work on a permanent funding solution to make sure that people can remain in their community homes. Read more about the issue and the bill here  and here.

• TAKE ACTION: Thank your NC General Assembly House member and NC General Assembly Senator for extending these funds for group homes which ensures that people will be able to stay in their homes.  Remember, NC House and NC Senate districts changed this year, so you should check to see which district you are in and who currently represents you in the General Assembly on the new easy to use district map page.

NC General Assembly Says They Will Not Expand Medicaid

The NC House and Senate have passed bills (H 16  and S 4 ) which would prevent NC from expanding Medicaid to cover an estimated 500,000 low income individuals who would not qualify for health insurance coverage subsidies from the Federal government that make insurance more affordable under the Affordable Care Act. Without subsidies, advocates are concerned than many of these individuals, which include single people with disabilities and families of children with special needs, will not be covered by health insurance. Rural hospitals and other health care providers have expressed concerns that without health coverage, and with the loss of Federal funds for those without health care, hospitals will bear high costs for people who show up needing emergency care. Governor McCrory has indicated that with the problems in Medicaid and without more assurances of long term funding from the Federal government, he does not support expanding Medicaid. Read more here and here.

• TAKE ACTION: ASNC supports expanding Medicaid to cover low income people, including those with autism spectrum disorder and their families, to ensure they have access to basic health care services. You can contact Governor McCrory and encourage him to veto this legislation, and say yes to expanding Medicaid. The Secretary of NC Health and Human Services has told the Legislature that problems in the Medicaid program that were recently identified in a state audit will be fixed by the end of the fiscal year. Let’s make sure we don’t leave people without healthcare in the coming years.

Federal and Congressional Update:

ABLE Act Reintroduced

The US Congress has reintroduced the Achieving a Better Life Experience Act (ABLE Act) HR 647 which would allow individuals with disabilities and their families to set funds aside in tax free savings accounts (similar to 529 plans used to fund college educations) that could be used to help a individual with a disability with the costs of education, housing, transportation, technology assistance, and employment without adversely impacting means-tested Medicaid and Social Security benefits. These funds could be used in addition to those benefit programs and help people live more stable and economically independent lives.

ACTION: Senator Richard Burr has already signed on as co-sponsor of the Senate bill: please thank him. Urge Senator Kay Hagan to sign on to S 313 and ask your Representative in the US Congress to sign on to HR 647.  To find out who represents you in the US Congress go to the House page and to find out how to contact Senators Burr and Hagan got to the Senate page.

Federal Regulators Leave Out Autism Coverage

When the Affordable Care Act (ACA) was passed, it included the requirement to cover “behavioral health treatment.” Advocates worked with Congress to include this language in the bill to ensure coverage of autism therapies such as applied behavioral analysis (ABA). Recent federal regulations were released for coverage of behavioral health treatment in health care exchanges which are required under the ACA to act as a health care marketplace for those not currently covered by group health coverage. Despite significant advocacy by autism groups and families, these regulations unfortunately do not include autism therapies like ABA as part of the definition of “behavioral health treatment.”  This leaves many states that have passed autism insurance laws in recent years in limbo, with state regulators left with the decision of whether or not to include these therapies in their health care exchange marketplace. Read more on this at Disability Scoop.

In addition, the Federal government has decided not to define the habilitation benefit under the ACA rules. The definition of what is covered under habilitation services has been left up to individual states. ASNC, working with other advocates for people with special health care needs, submitted comments to the Federal government and the state Department of Insurance encouraging them to set a definition and a basic set of services for habilitation that would include services such as respite, hands-on care, one-to-one skill building, and other habilitative services that really make a difference in people’s lives. ASNC will continue to advocate on this issue and monitor the outcome of decisions about the healthcare that will be available through North Carolina’s health care exchange market.

• TAKE ACTION: a North Carolina parent has created a nationwide White House petition to ask the President to respond to leaving ABA services out of federal regulations for the Affordable Care Act. Please sign the petition and share it with friends and neighbors, as well as through Facebook or other social media. You can sign the petition whether you agree with Obamacare or not: since the new health care law will be implemented next year, it should include services for those on the autism spectrum! The petition needs 100,000 signatures by March 24th so please sign now (You must register on the petition site to sign, but it’s worth it.)

To learn more contact Jennifer Mahan, Director of Advocacy and Public Policy, at jmahan@autismsociety-nc.org.

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.