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On August 11^th 2009, state lawmakers passed a $19 million state budget and adjourned a long and difficult legislative session.

Gov. Beverly Perdue signed the state’s $19 billion budget into law with “serious reservations”.

The Governor is not alone in her reservations about the final state budget.

There is no question that the deep cuts to health and human services and to education will hurt people with autism and other developmental disabilities (DD) and their families throughout the state.

We will not know the full impact of these budget cuts for months and the lasting effect on the system will not be known for years.

This legislative wrap-up focuses on the budget impact on Health and Human Services. We will also be posting the wrap-up for Education.

Here are some answers to your questions about the budget:

If the budget has been passed, why don’t we know more details about how the budget will change the programs for people with autism and their families?
We know the general categories of cuts, but we still do not know many of the specifics.

Much of this uncertainty is due to what happens to the budget once the legislature adjourns. The budget items that are to be reduced or cut are listed in what is called the “Money Report”. How the various governmental agencies will implement the cuts is directed by the “Special Provisions. ”

It takes time for the staff from the Department of Health and Human Services and their Divisions to analyze what the budget directs them to do and then to do it. So, for example, we know that some additional Tier One CAP- MR/DD slots will become available, but we do not know the specifics of how and when.

In addition, there are places in the budget that specify an amount to be cut, but directs the agency responsible for the program to decide where to cut.

In the Department of Health and Human Services (DHHS), Secretary Cansler has been given flexibility in a number of areas on how to meet budget targets.

In Education, many of the decisions on where to cut will be made by local public school leaders.

This means that over the next few weeks, we will know more about these plans and will update you.

Here are some links for more background information on the budget:

• To read the “Money report” click here. Health and Human Services is Section G, pages 41-63.  Education is Section F, pages 15 -41.
• To read the Special Provisions related to Health and Human Services, click here.  Special Provisions for Health and Human Services that particularly affect people with autism and their families are on pages 70-76 and 106-108.

Caution: If you find yourself more confused after reading the Special Provisions, know that you are not alone!  Much of the language is confusing and filled with legislative jargon.

Over the next weeks and months, it is important to note that we will be monitoring how these budget directives are carried out by the various governmental agencies who work with people with autism and DD, especially the Division of Mental Health/ Developmental Disabilities and Substance Abuse Services (Div. of MH/DD/SAS), the Division of Medical Assistance (DMA) and the Local Management Entities (LMEs).

We will let you know when public hearings and other opportunities are scheduled where you can make your needs known.

What are the health and human services cuts that affect people with autism and other developmental disabilities and their families?
There were substantial cuts to agencies that serve people with autism and DD and their families.

• Division of Mental Health/Developmental Disabilities /Substance Abuse Services (Division of MH/DD/SAS) This is the Division within the state government that oversees services for people with autism and other developmental disabilities. The overall reduction to the Division of Mental Health, Developmental Disabilities, and Substance is $155 million.
• Local Management Entities (LMEs): LMEs are the local government agencies responsible for managing, coordinating and monitoring services for people with autism and DD at the community level. Funding for LMEs was reduced by $40 million for state-funded services and over $3 million for administration.

Important note: The budget directs the LMEs not to reduce services if they have a fund balance (money they keep in a reserve account to cover unexpected expenses or delayed payments from the state).  The Division of MH/DD/SAS has been directed to develop a way to track and report how the LMEs use some of their fund balances before they cut services. We will be watching this process closely.

• Contracts with non-profit agencies: Funding was reduced by $785,000 for contracts with non-profits for a variety of services and supports to people with DD, (as well as mental health or addiction issues).   ASNC is one of many advocacy agencies that serve people with DD who received a substantial funding cut.
• Provider Rate Reductions: This cut affects providers of Medicaid services (like CAP- MR/DD.) Originally, the legislature directed the rate cut at a specific percentage, but the final budget provides flexibility to Secretary Cansler to set this rate reduction. The amount of the reduction has not yet been announced.
• Non-Core Community Services This cut of over $4 million reduces funds for community services that are not core to the mission of the Division of MH/ DD/ SAS. We are not sure what this cut will mean.

What about changes to CAP- MR/DD?
Throughout the session, advocates expressed deep concern that cuts to CAP- MR/DD would create significant hardships for people with autism and DD and their families who desperately need these services.

There was movement of money in and out of the budget for CAP- MR/DD throughout the session with strong advocacy by the House and Senate Health and Human Services Conference Chairs to keep funding for CAP-MR/DD in the budget.

Here is what happened:

• CAP- MR/DD Slots: While not nearly enough funding, the budget directs about $8 million to implement Tier 1 CAP- MR/DD slots and adds some people to Tier 4.
• Reduction in State Supplemental Funds: This cut of $16 million affects people who receive both CAP- MR/DD and additional state funds. They will retain their CAP funding, but will no longer be able to receive the additional state funds except for room, board, and time limited residential support.  For more information read Implementation Update 59
• Sliding Fee Scale for CAP-MR/DD families: This budget directs the Division of Medical Assistance (DMA) to develop a sliding fee scale for families of children with incomes above the Medicaid allowable limits. This would require families to share in the costs of their child’s Medicaid expenses under the CAP-MR/DD and the CAP-C (Community Alternatives Program for Children) programs.   DMA is required to consult with the Division of MH/DD/SAS and with CAP -MR/DD stakeholders.

From the Special Provision Section 10.65:  “The cost-sharing amounts shall be based on a sliding scale of family income and shall take into account the impact on families with more than one child in the CAP programs. In developing the schedule, the Department shall also take into consideration how other states have implemented cost-sharing in their CAP programs. The Division of Medical Assistance may establish monthly deductibles as a means of implementing this cost-sharing.

The Department shall provide for at least one public hearing and other opportunities for individuals to comment on the imposition of cost-sharing under the CAP program schedule. “

This proposal will need approval from the Centers for Medicare and Medicaid Services (CMS) at the federal level.

We will be following this closely and will let you know when the public hearings are scheduled.

Another way to follow this issue is to monitor the Division of Medical Assistance website (click here for DMA website)

• Consolidate Case Management Services: The budget reduces $41 million in case management and directs the Division of Medical Assistance (DMA) to consolidate case management services throughout the Medicaid program.

To address the reduction in funds for Medicaid Case Management services, DMA has started a working group of other DHHS and community agencies to identify ways to implement this reduction.  The minutes of these meetings can be found on the DMA website.   Both the Department of Medical Assistance (DMA) and the Division of MH/DD/SAS have websites where they update what they are doing to implement the budget directives from the legislature.

• Click here for the Division of MH/DD/SAS website.
• Click here for the Division of Medical Assistance website.

Did anything good happen in this legislative session for people with autism and DD and their families?
While only a drop in the bucket of need, there will be an increased availability of Tier 1 CAP-MR/DD slots. The other good news is that funding was directed to the START crisis model that serves adults with developmental disabilities.

There was also some good news on some policy bills that affect the autism community:

H 673 2009-186 Support For Developmental Disabilities Service
This legislation will create a statewide data collection system that will reflect the number of people with developmental disabilities who are currently waiting for services.

The waiting list will collect data on people with developmental disabilities who may qualify for the following targeted services:

1.  Waiting for residential services.

2.  Potentially eligible for CAP-MR/DD.

3.  In need of other State-funded services and supports for people with DD.

This bill directs DHHS Secretary Cansler to develop and adopt rules governing a statewide data system.

This statewide data collection system will be of great help as we continue to advocate with the legislature to address the many gaps in services and the long waiting list for CAP-MR/DD and residential services.

Thanks to the Arc of NC for their leadership on this bill.

H 775 2009- 514 Alternative Testimony/Children and Adults with DD
This Act provides for alternative means of testimony for persons with DD as recommended by the Joint Study Committee on ASD and Public Safety.

Thanks to committee member Kim Taylor and to Annaliese Dolph from Disability Rights NC for their leadership on this bill.

Another piece of good news is that the Joint Study Committee on ASD and Public Safety has been reauthorized. Their mandate is to study ways to increase availability of autism- specific education and training to public safety personnel, first responders, judges, district attorneys, magistrates and related organizations.

H 945 The Studies Act of 2009
One of the studies authorized in this bill is on autism health insurance coverage. This bill establishes a commission to study the merits of providing health insurance coverage for the diagnosis and treatment of autism spectrum disorders.

ASNC has a two pronged approach to getting autism health insurance in NC.  This study bill is the first legislative step toward having a bill for autism insurance coverage in NC to be introduced in the short session.

We are also working on federal autism health insurance through advocacy with our NC Congressional Delegation. We are asking them to include autism insurance coverage in the Heath Care Reform bill and to co-sponsor and pass the Autism Treatment Acceleration Act (ATAA).

S 208 2009-264 People First
This bill directs the Legislative Services Office to incorporate people first language in preparation of legislation and rules.

Now that the session is over, did our advocacy make a difference?
There is no question that this has been a difficult and dispiriting legislative session.

There is also no question that without your persistent advocacy with your legislators this session, the budget cuts and reductions in services would have been even more harmful to people with autism and their families.

Because of your efforts funding was restored in many areas where it had been completely eliminated before your calls, letters, and visits with your legislators.

Thank you for all your work during this very difficult legislative session.

What do we do now?
The General Assembly officially adjourned on August 11, 2009 and will reconvene on May 12, 2010 for the short session.  The legislature has finished its business for the session and legislators are now at home in their districts.  But our work together to keep the needs of people with autism and their families before our legislators does not end.

We will need your help during this time between sessions to let our elected leaders know the impact of this budget on the lives of real families in the autism community.  Not in Raleigh, but with visits and contacts with legislators in their home districts.  There are some legislators we need to visit and thank – for the uphill battle they fought this session to preserve supports and services for people with autism and other developmental disabilities.  There are other legislators we need to visit and educate- to explain how the programs they cut hurt  people with autism and DD in their community and to express our dissatisfaction not only as members of the autism community, but as voters as well.  In addition to legislative visits, we will be reporting on activity of the legislative committees that meet between September and May.

One of the most important committees is the Joint Legislative Oversight Committee on MH/DD/SAS. This is the committee that will be hearing a number of reports on CAP-MR/DD and other services for people with autism and DD.  Usually this committee meets at the legislature in  room 643 LB and their discussions can be heard on the audio section of the Legislature’s website.  To find the scheduled meetings of this committee, click here.

Our goal is that when our legislators return for the next session, they will make programs and services for people with autism and DD the priority that it was not in this last session.

Please continue to work with us on improving services and supports for people with autism and their families.  Watch for updates on the ASNC blog and newly redesigned website.

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