“The Waiting List”: Am I on It?

For quite a while, the Autism Society of North Carolina has been telling the public about the changes to the CAP MR/IDD waiver, a home- and community-based program that helps people with autism and other intellectual and developmental disabilities get services and supports. (For previous posts, click here and here.)

Last year, the CAP IDD program became known as the Innovations waiver when all of the Local Management Entities (LMEs) – sometimes called your local mental health centers – became Managed Care Organizations (MCOs). CAP IDD, now Innovations, has had a waiting list for many years because of restrictions on funding for slots in the program, but some additional funds have become available in some counties.

LME/MCOs are still tracking individuals who are waiting for services. We recommend contacting your LME/MCO to be sure your contact information and needs are accurate and up-to-date. As LME/MCOs release waiver slots and improve access through B3 services, which includes respite for people with IDD, they need to be sure their information is correct about who is waiting for what type of services. It’s especially important to contact the LME/MCO if you have moved or changed phone numbers. You can find your LME/MCO here.

If you have questions about public policy issues, please contact Jennifer Mahan, Director of Advocacy and Public Policy, at 919-865-5068 or jmahan@autismsociety-nc.org.

A look back at a remarkable year

looking-backA few highlights from 2013

2013 was a busy year in the autism community. We witnessed the changeover in statewide service delivery from Local Management Entities (LMEs) to Managed Care Organizations (MCOs). Issues that had stalled for years with the legislature moved forward, but not all the way into law. And more families learned that they have a member on the autism spectrum. All in all, it was a significant year, and we would like to highlight just a few items as the year draws to a close.

Medicaid Waiver Transition
Many families receive funding for services through Medicaid in our state. Many more are eligible and are waiting for services. The first quarter of the year saw a change in service delivery that consolidated 22 LMEs down to 10 MCOs. The transition had some rough spots, and the Autism Society of North Carolina (ASNC) continues to work with MCO staff and families to advocate for improvements to the system and expansion of services to more individuals with autism.

Autism Insurance (House Bill 498)
For over five years, ASNC has worked with parents, professionals, and a coalition of other autism organizations to educate lawmakers about the impact that insurance coverage for autism would have in our state. These efforts resulted in an incredible 48 hours of activity in May. During those 48 hours, HB 498 was discussed and approved by the House Insurance Committee and the Appropriations Committee, and then passed the full House by a 105-7 margin. This moved the bill to the NC Senate, where if approved it would proceed to the governor. As the legislative session drew to a close, HB 498 was not given a hearing by the Senate, but it remains alive, and we expect the Senate to take this up at the start of the 2014 short session.

Expanding Services
Along with the waiver transition, many providers of services either scaled back their caseload, or in some cases, ceased operations. The Autism Society of North Carolina has worked to continue high-quality services and expand the regions in which we are able to offer them. These efforts included hiring a Services Coordinator and opening a new office in Charlotte. Now families in that area of the state will be able to access additional services from the organization. View the Autism Society of North Carolina services offices here.

Connecting with and Helping Self-Advocates and Families
This is the core of what we do, and during 2013, the Autism Society of North Carolina assisted thousands of individuals on the autism spectrum and their families through our Autism Resource Specialists, chapters, and support groups. Autism Resource Specialists (formerly Parent Advocates) cover all 100 counties and assist with information and referral, school issues, parent training, and community education. If you have not tapped into their expertise, please make sure to connect in 2014.

Celebrating and Accepting
On April 2, more than 500 people traveled to Camp Royall to celebrate World Autism Awareness Day (WAAD). This was the first ASNC attempt to have a public event in recognition of this day, and we were blown away by the response. Families traveled from as far away as Charlotte, Asheville, and the coast to enjoy fellowship, food, and fun with the variety of activities the camp offers. Camp Royall not only hosted WAAD, but also provided summer camp for over 350 individuals and served 900 more during year-round programming. 2013 marked the 42nd consecutive year that ASNC has offered a summer camp, the longest running summer camp program for individuals with ASD in the nation. Our community also celebrated awareness and acceptance at our Run/Walk for Autism events throughout the state. From the mountains to the sea, thousands of families and community members came together to walk, run, volunteer, and raise money to support each other and ASNC. More than $500,000 was raised through these events – a new record. What an accomplishment.

Collaboration and Community
Everything we do is related to providing support to and increasing opportunities that enhance the lives of individuals on the autism spectrum and their families. These principles guided us when the founders started the organization almost 44 years ago, and they still guide us today. Parent and professional collaboration is the key to promoting understanding and acceptance, and for your support – whether you have donated to the organization, written an email to a legislator, shared our website address or phone number with a family in need, or volunteered your time – we say THANK YOU. All of the above would not have happened without your involvement.

Best wishes for the New Year!

Sincerely,
David Laxton
Director of Communications

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. ]

CAP I/DD Waiver Changes Part 2

The Community Alternatives Program for people with intellectual and developmental disabilities (CAP I/DD, formerly known as CAP MR/DD) is expected to change beginning November 1st, 2011. Changes to the program still need to be approved by the Federal Government, however approval is expected and the Division of Medical Assistance which operates the CAP I/DD in North Carolina is moving ahead as if the plan will be implemented November 1st, 2011. These changes are being made so that the CAP I/DD Waiver stays within its budget and so that the waiver has similar services to the new Innovations Waiver that will be part of the new managed care system in North Carolina. Reductions in habilitation hours are the result of CAP I/DD being over budget and no new funds being appropriated.

If you do not make plan revisions before November 1, your CAP I/DD plan will not “roll over” to the new CAP waiver. Let me say that again: this is a new waiver, your current plan will not automatically change to the new waiver with fewer hours. You must submit a revised person centered plan in order for CAP services to continue after November 1st.

The Biggest Changes:

There will be a 129 hour per month limitation on habilitation hours for adults and children.

“Habilitation” includes Day Supports, Supported Employment, Long Term Vocational Supports and Home and Community Supports.

The 129 hour limit is inclusive of all these habilitation services; the total number of hours of these services cannot exceed 129 hours.

It does not include habilitation hours provided in Residential Supports and/or Home Supports.

Habilitation hours for children in school will be reduced to 20 hours per week. This includes any week school is in session, even for one day, even if the child is not in school that particular week.

The 129 hour limit is a monthly limit; it is not a yearly average of habilitation hours.

Home supports will no longer be a service under the 2011 CAP I/DD waiver. Personal care and Home and Community Supports may be used instead of Home Supports. Hours restrictions that apply to rest of waiver apply to those transitioning out of Home Supports.

Family members can continue to provide Home and Community Supports and Personal Care as they did under Home Supports. Other services under the CAP I/DD Waiver, such as Day Supports and Respite, cannot be provided by family members.

What You Need to Do:

This is a difficult time for families and people on the autism spectrum who get CAP I/DD (MR/DD). The system is already confusing and many changes are going on all at once. It is hard for the Autism Society in North Carolina (ASNC) to give good advice about the upcoming changes: on the one hand, the waiver has not yet been approved so if you make changes to your CAP plan, hours will be reduced now. On the other hand if you wait to make those changes because there may be some delay in getting a new plan approved which could mean services are interrupted.

Repeated: If you do not make plan revisions before November 1 and the Waiver is approved (and we expect it will be), your plan will not “roll over” to the new waiver. You must submit a new plan in order for services to continue after November 1st.

Legal Rights and Recommendations:

Legal Services of Southern Piedmont, in consultation with Disability Rights North Carolina and the National Health Law Program, has issued the following advice.

1. Personal care: If the recipient is under age 21, EPSDT [Federal laws about early periodic screening diagnosis and treatment] applies. This means the family can request in their plan more hours of personal care than the clinical policy criteria allow and/or can ask in the plan to keep enhanced personal care because it is medically necessary.

2. If the recipient is age 21 or older, the family can ask in the plan for enhanced personal care or for additional hours as a reasonable modification under the Americans with Disabilities Act (ADA) if the recipient at serious risk of institutionalization without the service.

3. Either a child or adult can request more hours of personal care if a revised SNAP is submitted showing higher level of need than previous SNAP.

4. Habilitative services and respite: EPSDT probably does not apply. But either a child or adult can ask in the plan for more than 129 hours per month as a reasonable modification under the ADA if at serious risk of institutionalization without the service.

5. Private Duty Nursing (PDN): if the recipient is under age 21 the family can ask to keep the service under EPSDT if medically necessary.

6. PDN: if the recipient is age 21 or older, the family can request to keep the service for longer than 30 days so long as criteria for PDN are met or as a reasonable modification under ADA if at serious risk of institutionalization without the service.

7. Other new restrictions on services: the family can request a waiver of the rule as a reasonable modification under ADA if at serious risk of institutionalization due to restriction.

8. The family absolutely has the right to submit a plan asking for services in excess of policy limits in the above circumstances.

9. If the recipient is under age 21 and the plan is denied, the family will receive a written notice with appeal rights. The family must appeal to the Office of Administrative Hearings (OAH) within 30 days. The recipient will be able to continue to receive services at the prior level pending the outcome of the appeal. The appeal process starts with a telephone mediation. If the mediation is not successful, the case goes to an Administrative Law Judge (ALJ) for hearing.

10. If the recipient is age 21 or older and the plan is denied as in excess of policy limits, the provider will get notice but not the family. The notice will not include appeal rights. However, the family nonetheless can file an appeal in OAH if there is a valid factual issue for appeal rather than just a challenge to the legality of the policy. The family can argue to the ALJ that whether a reasonable modification under the ADA is needed in that case is a factual issue. If the ALJ agrees, the family can ask that services be reinstated pending the outcome of the appeal.

11. Even if the family decides not to request services in excess of policy limits at this time or not to appeal if that request is denied, the family and case manager should monitor the recipient’s conditions and health. If that deteriorates, the family can ask for the plan of care to be amended to increase the level of service and appeal if that request is denied. However there is no right to continued services pending appeal in that instance.

12. The family also has the right to challenge the plan denial in federal court instead of OAH.

13. Legal representation is likely to be needed to succeed in an appeal in these cases. Families who submit a plan that is denied and who want to appeal can contact:

Disability Rights NC (statewide) 1-877-235-4210

Legal Aid of NC (statewide) 1-866-369-6923

Legal Services of Southern Piedmont (if recipient lives in Mecklenburg county) 704 376 1600

Council for Children’s Rights (if recipient is a child and lives in Mecklenburg) 704 372 7961

Pisgah Legal Services (if recipient lives in Buncombe, Henderson, Madison, Polk, Rutherford or Transylvania counties) 1-800-489-6144

However, be aware that these nonprofit agencies have limited resources and cannot represent many of the families that contact them. Families with the means to do so may wish to contact a private attorney.

Additional Recommendation from ASNC:

16. Due to the expected number of person centered plan revisions that will be submitted to Medicaid and Local Management Entities, the Division of Medical Assistance is recommending that services are transitioned at least 15 business days prior to October 31st. Plan revisions should be submitted as soon as possible to allow time to complete authorization of services. Some areas of the state may be able to process plan changes more quickly and Local Management Entities may be saying its ok to wait until October 15th or later. You should use your best judgment in determining how long to wait before changing CAP plans; delays could mean interruption of services because existing plans will not roll over to the new waiver.

Other Resources:

NC Division of Mental Health, Developmental Disabilities and Substance Abuse Services Implementation Updates Page (current information on services, policies)

The following information is from Western Highlands LME based on information about the CAP I/DD waiver from the NC Division of Mental Health Developmental Disabilities and Substance Abuse Services and the NC Division of Medical Assistance. It may be helpful in determining if you need to make changes to your plan.

Current CAP MR/DD Waiver New CAP I/DD Waiver  (Nov 1 2011) What should participant do?
Adult Day Health Care Services Adult Day Health Care Services No action required.
Behavioral Consultant Behavioral Consultant No action required.
Crisis Respite Crisis Respite No action required.
Crisis Services Crisis Services No action required.
Day Supports  Day Supports   Action required if total hours of habilitation services exceeds 129 hours per month in combination. See Guidance for Habilitation Services Transition.
Enhanced Personal Care  Personal Care OREnhanced Personal Care Action required if participant receives the service to address intense behavioral issues. See Guidance for Enhanced Services Transition.
Enhanced Respite Care  Respite Care  OREnhanced Personal Care Action required if participant receives the service to address intense behavioral issues. See Guidance for Enhanced Services Transition.
Home and Community Supports Home and Community Supports Action required if total hours of habilitation services exceeds 129 hours per month in combination. See Guidance for Habilitation Services Transition.
Home Modifications Home Modifications No action required.
Home Supports Home and Community Supports

AND / OR

Personal Care

Action required that terminates existing authorization. Service should be replaced with level of periodic services determined to meet the needs of the participant. Services requested should be within the Utilization Review Criteria. See Guidance for Home Supports Transition.
Individual Caregiver Training and Education Individual Caregiver Training and Education No action required.
Long Term Vocational Supports Long Term Vocational Supports Action required if total hours of habilitation services exceeds 129 hours per month in combination. See Guidance for Habilitation Services Transition.
PERS PERS No action required.
Personal Care Services Personal Care Services No action required.
Residential Supports Residential Supports Action required if combination of habilitation hours required for the daily level (see Utilization Review Guidelines) and any daily periodic habilitation services exceed 12 hours on any given day. Teams must consider direct contact hours. Targeted Case Management should update the Person Centered Plan to ensure that habilitation does not exceed 12 hours on any given day if necessary.
Respite Care Respite Care No action required.
Specialized Consultative Services Specialized Consultative Services No action required.
Specialized Equipment and Supplies Specialized Equipment and Supplies No action required.
Supported Employment Supported Employment Action required if total hours of habilitation services exceeds 129 hours per month in combination. See Guidance for Habilitation Services.
Transportation Transportation No action required.
Vehicle Adaptation Vehicle Adaptations No action required.

[Note that the timelines listed below may vary from LME to LME. See your case manager plan submission deadlines. ]

Guidance for Habilitation Services:

Periodic services are reimbursed in 15 minute units. Support services do not require a habilitation component. Currently, the waivers provide enhanced and standard periodic support services (Personal Care & Respite Care) for individuals with intense medical and/or behavioral needs. Enhanced periodic support services will not be available for intense behavioral needs on October 31st.

Enhanced periodic support services will be available for individuals that have intense medical needs that require a higher level of service to prevent hospitalization or placement in a skilled facility. To meet medical necessity criteria, the participant must require the following:

• Expertise and supervision of a Registered Nurse (RN) or a Licensed Practical Nurse (LPN) because of complexity or critical nature of activities provided

• Person Centered Plan must clearly document the need for the enhanced periodic service

• Enhanced periodic support services staff will receive training and/or supervision from an RN or LPN at minimum monthly

Enhanced periodic support services for intense behavioral needs should be replaced with standard periodic support services. Standard periodic support services will typically be limited by the Utilization Review Criteria outlined in Clinical Coverage Policy #8M.

If a participant is authorized to receive enhanced periodic support services to address intense behavioral needs past October 31st, their Person Centered Plan should be updated to either change the enhanced periodic support services to standard periodic support services or to provide justification to continue the enhanced level of services. A complete update should be submitted to the appropriate Utilization Review vendor by October 15th.

If the participant’s annual Person Centered Plan begins on November 1st, the Targeted Case Manager should submit a complete request package to the appropriate Utilization Review vendor by October 1st. Enhanced or standard periodic support services should be requested as deemed necessary by the planning team with the annual plan of care within the medical necessity and Utilization Review Criteria outlined in Clinical Coverage Policy #8M.

Should the participant and/or legal guardian of the person refuse to request services with the Person Centered Plan or update that are within the medical necessity and Utilization Review Criteria, the Targeted Case Manager should submit a complete request that reflects the periodic support services that the participant and/or legal guardian of the person believe are medically necessary. Complete requests may exceed the limits established for all periodic support services.

Upon receipt of a complete request, the Utilization Review vendor will review requests for medical necessity and render a decision. The Utilization Review vendor will offer the participant and/or legal guardian of the person due process rights as applicable.

The Utilization Review vendor will ensure that requests for children (<21 years of age) in excess of the Utilization Review Criteria are reviewed with consideration of Early and Periodic, Screening, Diagnostic, and Treatment (EPSDT) Special Provisions as applicable.

For a request to be considered complete by the Utilization Review vendor, the Person Centered Plan update or annual plan of care must be signed by the participant and/or the legal guardian of the person.

Changes to CAP I/DD (MR/DD) Waiver

The Community Alternatives Program for people with intellectual and developmental disabilities (CAP I/DD, formerly known as CAP MR/DD) is expected to change beginning November 1st, 2011. Changes to the program still need to be approved by the Federal Government, however approval is expected and the Division of Medicaid Assistance which operates the CAP I/DD in North Carolina is moving ahead as if the plan will be implemented November 1st, 2011. These changes are being made so that the CAP I/DD Waiver has similar services to the new Innovations Waiver that will be part of the new managed care system in North Carolina. Reductions in habilitation hours are also the result of cuts to Medicaid funding.

The Biggest Change:

There will be a 129 hour per month limitation on habilitation hours for adults and children.

“Habilitation” includes Day Supports, Supported Employment, Long Term Vocational Supports and Home and Community Supports.

The 129 hour limit is inclusive of all these habilitation services; the total number of hours of these services cannot exceed 129 hours.

It does not include habilitation hours provided in Residential Supports and/or Home Supports.

Habilitation hours for children in school will be reduced to 20 hours per week.

The 129 hour limit is a monthly limit; it is not a yearly average of habilitation hours.

This is a difficult time for families and people on the autism spectrum who get CAP I/DD (MR/DD). The system is already confusing and many changes are going on all at once. It is hard for the Autism Society in North Carolina (ASNC) to give good advice about the upcoming changes: on the one hand, the waiver has not yet been approved so if you make changes to your CAP plan, hours will be reduced now. On the other hand if you wait to make those changes there may be some delay in getting a new plan approved which could mean services are interrupted.

Recommendations and Rights:

Legal Services of Southern Piedmont, in consultation with Disability Rights North Carolina and the National Health Law Program, has issued the following advice.

1. Personal care: If the recipient is under age 21, EPSDT [Federal laws about early periodic screening diagnosis and treatment] applies. This means the family can request in their plan more hours of personal care than the clinical policy criteria allow and/or can ask in the plan to keep enhanced personal care because it is medically necessary.

2. If the recipient is age 21 or older, the family can ask in the plan for enhanced personal care or for additional hours as a reasonable modification under the Americans with Disabilities Act (ADA) if the recipient at serious risk of institutionalization without the service.

3. Either a child or adult can request more hours of personal care if a revised SNAP is submitted showing higher level of need than previous SNAP.

4. Habilitative services and respite: EPSDT probably does not apply. But either a child or adult can ask in the plan for more than 129 hours per month as a reasonable modification under the ADA if at serious risk of institutionalization without the service.

5. Private Duty Nursing (PDN): if the recipient is under age 21 the family can ask to keep the service under EPSDT if medically necessary.

6. PDN: if the recipient is age 21 or older, the family can request to keep the service for longer than 30 days so long as criteria for PDN are met or as a reasonable modification under ADA if at serious risk of institutionalization without the service.

7. Other new restrictions on services: the family can request a waiver of the rule as a reasonable modification under ADA if at serious risk of institutionalization due to restriction.

8. The family absolutely has the right to submit a plan asking for services in excess of policy limits in the above circumstances.

9. If the recipient is under age 21 and the plan is denied, the family will receive a written notice with appeal rights. The family must appeal to the Office of Administrative Hearings (OAH) within 30 days. The recipient will be able to continue to receive services at the prior level pending the outcome of the appeal. The appeal process starts with a telephone mediation. If the mediation is not successful, the case goes to an Administrative Law Judge (ALJ) for hearing.

10. If the recipient is age 21 or older and the plan is denied as in excess of policy limits, the provider will get notice but not the family. The notice will not include appeal rights. However, the family nonetheless can file an appeal in OAH if there is a valid factual issue for appeal rather than just a challenge to the legality of the policy. The family can argue to the ALJ that whether a reasonable modification under the ADA is needed in that case is a factual issue. If the ALJ agrees, the family can ask that services be reinstated pending the outcome of the appeal.

11. Even if the family decides not to request services in excess of policy limits at this time or not to appeal if that request is denied, the family and case manager should monitor the recipient’s conditions and health. If that deteriorates, the family can ask for the plan of care to be amended to increase the level of service and appeal if that request is denied. However there is no right to continued services pending appeal in that instance.

12. The family also has the right to challenge the plan denial in federal court instead of OAH.

13. Legal representation is likely to be needed to succeed in an appeal in these cases. Families who submit a plan that is denied and who want to appeal can contact:

Disability Rights NC (statewide) 1-877-235-4210

Legal Aid of NC (statewide) 1-866-369-6923

Legal Services of Southern Piedmont (if recipient lives in Mecklenburg county) 704 376 1600

Council for Children’s Rights (if recipient is a child and lives in Mecklenburg) 704 372 7961

Pisgah Legal Services (if recipient lives in Buncombe, Henderson, Madison, Polk, Rutherford or Transylvania counties) 1-800-489-6144

However, be aware that these nonprofit agencies have limited resources and cannot represent many of the families that contact them. Families with the means to do so may wish to contact a private attorney.

Additional Recommendations from ASNC:

14. Go to one of the information session listed below, if you can. They are free of charge.

15. Meet with your case manager and have a new Person Centered Plan prepared and ready to sign (but not actually signed), should the CAP waiver changes be approved in time for the Nov 1 deadline.

16. Due to the expected number of person centered plan revisions that will be submitted to Medicaid and Local Management Entities, the Division of Medical Assistance is recommending that services are transitioned at least 15 business days prior to October 31st. Plan revisions should be submitted no later than October 4th to allow time to complete authorization of services. Some areas of the state may be able to process plan changes more quickly and Local Management Entities may be saying its ok to wait until October 15th. You should use your best judgment in determining how long to wait before changing CAP plans; delays could mean interruption of services.

Information Sessions on New Waiver:

The Developmental Disabilities Training Institute has scheduled 5 CAP-I/DD Informational Sessions for the purpose of communicating the changes in the CAP-I/DD Comprehensive and Supports Waivers that will be effective 11/1/11. The sites for the sessions were selected to accommodate as many interested individuals as possible. Please be sure to register early and encourage others to do the same. They are free of charge, be sure to sign up ahead of time and arrive early.

Please use the links below for obtaining all the details regarding each of the events and for registration purposes:

Tuesday, Sept. 20, Greenville

Wednesday, Sept. 21, Wilmington

Monday, Sept. 26, Asheville

Tuesday, Sept. 27, Newton

Wednesday, Sept. 28, Sanford

Other Resources:

NC Division of Mental Health, Developmental Disabilities and Substance Abuse Services Implementation Updates Page (current information on services, policies)

Chart Comparing CAP Waiver to Innovations Waiver  (Note that the Innovations waiver is currently operating in PBH and will begin operation in several other LME regions in 2012. This chart does not compare the existing CAP waiver to the CAP waiver that is expected to begin Nov. 1, 2011.)

Information Sessions on CAP I/DD Waiver Changes

North Carolina’s Community Alternatives Program for people with intellectual and developmental disabilities (CAP I/DD formerly CAP MR/DD) is expected to change as of November 1, 2011. The Autism Society of North Carolina will publish a longer blog post about those changes, which includes a limit on the number of habilitation hours.

The Developmental Disabilities Training Institute has scheduled 5 CAP-I/DD Informational Sessions for the purpose of communicating the changes in the CAP-I/DD Comprehensive and Supports Waivers that will be effective 11/1/11.  The sites for the sessions were selected to accommodate as many interested individuals as possible. Please be sure to register early and encourage others to do the same.

Please use the links below for obtaining all the details regarding each of the events and for registration purposes:

Tuesday, Sept. 20, Greenville

Wednesday, Sept. 21, Wilmington

Monday, Sept. 26, Asheville

Tuesday, Sept. 27, Newton

Wednesday, Sept. 28, Sanford

Upcoming changes for CAP MR/DD Waiver recipients

Changes are coming to North Carolina’s  Medicaid Waiver program, commonly referred to as the Community Alternatives Program for Persons with Mental Retardation/Developmental Disabilities or CAP MR/DD.

In July, the NC Division of Medical Assistance (DMA- which oversees Medicaid in NC) and the Division of Mental Health/Developmental Disabilities/Substance Abuse (MH/DD/SAS) announced new policies for CAP MR/DD waiver services that will limit recipients to 129 habilitative service hours per month. There are other changes in the policies as well.

When the new policies were announced, the Autism Society of North Carolina, Inc., The Arc of NC, and other advocacy and provider groups, voiced strong concerns about many of the changes during and after the public comment period. Despite our opposition, these utilization limits and policy changes are moving forward with slight changes from the original policy.

The following is a short overview of some of the upcoming changes. To view complete information about the changes and related documents click here to go the Division of MH/DD/SAS CAP Waiver website.

Changes:

People using CAP DD Waiver services will be limited to a total of 129 hours of month of habilitative service hours. At this time the 129 hour limit does not include the Residential Support or Home Support hours.  There are also new requirements for direct contact hours for Residential and Home Supports, but these do not go into effect until October 31, 2011.

The habilitative services that are counted toward the monthly 129 hour limit are:

  • Supported Employment
  • Day Supports
  • Long-Term Vocational Supports and/or
  • Home and Community Supports.

This means that you will add up the monthly hours of the 4 services listed above and the total cannot be more than 129 hours in any given month. These limits will go into effect on May 30, 2011 UNLESS your Case Manager fills and submits out an Extension/Exception Request Form on time (and it is approved).

If you/your family member currently receive more than 129 hours of habilitative supports, your Case Manager will need to do a plan revision to change the habilitative hours to meet the 129 hour monthly limit.

If you and your Case Manager believe that you cannot cut your habilitative services to meet the May 30th deadline and/or the health and safety of the waiver recipient is in danger, then an Extension/Exception Request must be filled out and submitted by your Case Manager to your LME no later than December 1.  The exception request will be reviewed by the LME and then sent to the Division of MH/DD/SAS to be reviewed.

If your Extension/Exception is denied, you WILL have the right to appeal.

If you do not have your Case Manager fill out and submit the Extension/Exception Request Form to your LME on time, you do NOT have the right to appeal because these limits are based on a change in state policy.

For questions, and if you need an Exception/Extension filed contact your Case Manager. If you are having difficulty contacting your Case Manager, please contact their supervisor.  If you are still having problems and are concerned the Extension/Exception form will not go in on time, contact your LME.

Again, the policy changes limiting habilitative hours go into effect on May 30, 2011 unless your Case Manager has submitted the “Exception/Extension Form” on time (by December 1, 2010). Then you need to wait to find out the outcome of your Extension/Exception request.

You should talk to your Case Manager about these changes. If you have additional questions you may contact an Autism Society of North Carolina parent advocate line at 919-865-5093 or 1-800-442-2762, ext 1138 or The Arc of NC at 1-800-662-8706.

If you need legal assistance with your appeal you can contact:

There are also other changes coming to CAP DD waiver services:

Parents/legal guardians and any other person living in the home cannot provide any CAP services to their minor (under 18) children in all settings, effective Feb 1, 2011 unless an Extension/Exception is filed. Also adult participants (18 and older) residing with their natural, adoptive and/or step parents may receive Home Supports provided by parents, family and/or guardians residing with them. Home Supports is the only service that can be provided by a parent of an adult participant. All of the changes can be found on the Division of MH/DD/SAS website.

Information from The Division of MHDDSAS on CAP MR/DD changes can be viewed by clicking here. The “Talking Points” document is an overview of the new policies and the “CAP Utilization Review Guidelines” is a Power Point presentation which reviews the technical amendments in the new clinical policy manual and new policies (Before printing, please note that the presentation is 99 slides). You will find other information and links as well.

If you want to voice your dissatisfaction with these changes you can write to:

Craigan Gray, Director                                                                       Steve Jordan, Director
NC Div. of Medial Assistance                                                           NC Div of MH/DD/SAS
2501 Mail Service Center                                                                  3001 Mail Service Center
Raleigh, NC 27699-2501                                                                   Raleigh, NC 27699-3001

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