The Autism Society of North Carolina previously provided an update  about major changes that were expected to take place November 1, 2011 for people currently receiving CAP IDD (MRDD) Waiver services. It is our understanding that the Division of Medical Assistance and Division of MHDDSAS have requested another extension of the current waiver until April 1, 2012.

Please see below for excerpts of the information sent out by NC’s Division of Medical Assistance and Division of MH/DD/SA on Tuesday, December 13:

“We have requested April 1, 2012 as a start date for the CAP-I/DD waiver, but are still awaiting confirmation from CMS on their approval of this date. We appreciate the amount of time that recipients, families, case managers, and providers have spent working on developing transition plans. To that end, we have drafted the following guidelines in an attempt to minimize further disruption for recipients and their families. Please review the following bullets to determine if the case manager and recipient/family need to submit an updated revision (authorization request), including the PCP revision form with appropriate signatures, CTCM form, and updated cost summary.

1. If services were authorized to fit the new waiver requirements and the recipient/legally responsible person accepted the plan/services, then a revision (authorization request) does not need to be submitted. Specifically, if a request to change Home Supports services to Home and Community Supports and Personal Care has been approved, those services can be provided.

2. If services currently authorized under the 2008 CAP MR/DD waiver are not in compliance with the new proposed waiver requirements, then a revision (authorization request) does not need to be submitted at this time. A revision for authorization of new services must be submitted by April 1, 2012 to have services meet the requirements under the new waiver.

3. If an authorization request was approved to change services to meet the new waiver requirements, and the recipient/legally responsible person would rather continue with their current services under the 2008 CAP waiver, then the case manager needs to document this information into a case management note and update the PCP and cost summary for the recipient record. This updated PCP will serve as the authorization in the interim until April 1, 2012. The case manager does not submit this information to the UR Vendor. The plan that was to go into effect on January 1, 2011 will now go into effect on April 1, 2012.

4. If a revision request was sent to the UR vendor to change services to meet the new waiver requirements, the UR vendors will process the request with an effective date of April 1, 2012. The case manager will need to contact the UR Vendor if they would like the request that was submitted to be effective January 1, 2011 instead of April 1, 2012.

5. If a CNR (yearly renewal) with an effective date of January 1, 2011 has been approved or is currently being reviewed by a UR Vendor, and the recipient/legally responsible person would rather continue with their current services, then the case manager needs to update the PCP and cost summary to show 3 months of services under the current waiver and 9 months of services in compliance with the requirements of the new waiver. This updated CNR must be submitted to the UR Vendor by April 1, 2012

Please stay in contact with your case manager if you have questions about your particular services or plans.

With the holiday season comes both excitement and stress. Changes in schedule, time off from work and school, travel, parties, visiting relatives, special foods, special clothes, shopping and decorations are just some of the reasons that this time of year can be especially difficult for kids with autism and their parents.

How did your family, your child with autism, handle the Thanksgiving holiday? If there were some rough moments or meltdowns—what did you learn from them? What did your child’s behavior communicate? Taking time to think about it now might help you see where adjustments can be made so that your child can cope and enjoy himself next time. What do structured teaching strategies look like at home during the winter holidays?

Remember—think visual.

Start with a calendar. Include on the calendar any travel dates, places you’ll be visiting and when you will arrive back home. If you are going to be staying in the home of relatives, or if they will be visiting you, communicate with them in advance. Be an autism ambassador.

Will your furniture need to be rearranged to allow for holiday decorations? Try drawing a floor plan and allow your child to help with the changes in whatever way he can.

Social stories can share family traditions with your child in advance. Draw pictures using thinking clouds and speech bubbles to help your child understand what others might be thinking about and for scripting responses to holiday greetings.

Don’t forget to use a flexible daily schedule to let your child know the general sequence of events each day. Sometimes parents resist using a schedule because of the possibility that a change will arise, however, most of our kids can handle change better than they can handle not knowing.

Which brings me to a sensitive issue. Not all children love surprises. In fact, for some of our kids, a wrapped gift that they must wait to open provokes tremendous anxiety. It isn’t fun anymore. One wise mother redefined success, allowing for her child’s anxiety issues. Not only did her child see what his gift would be, he helped wrap it! The calendar was marked for the big day and he could enjoy the anticipation without the anxiety of not knowing.

Remember that rich holiday sights, sounds and smells can be overwhelming for a kid with ASD. With a little forethought you can temper sensory bombardment (earplugs, headphones, chewing gum, favorite leisure activity, etc.). Create a quiet place and give your child permission to retreat whenever necessary. Explain to your guests the need to safeguard your child’s sanctuary.

Most importantly, be reasonable in your expectations. Do not compare yourself and your family with others or with the “ideal” family that is often portrayed at holiday time. Stay balanced, keep things in perspective, get support and make time for yourself.

Kathy Dolbee is a Parent Advocate for the Autism Society of North Carolina. She will be presenting on “Creative Ways to Teach Social Thinking and Social Skills for Home and School” at the organization’s 2012 Conference on March 31 in Charlotte, NC. For more information about the conference click here.

By Kathleen Dolbee, ASNC Parent Advocate

Parents of kids with ASD often become experts on the subject of autism. Back when my son was first diagnosed, I was starving for information. I read every book I could get my hands on. I was less concerned with academic progress and most interested in addressing his social and communication deficits. He received speech therapy and his goals included appropriate responses to social greetings, engaging in reciprocal conversations, staying on topic, etc. I wrote social stories and drew comic strip conversations, even creating a “Book of Friends” to help him get to know his peers, and over the years he has made progress. However, it recently dawned on me that while my intentions were good, I had omitted a vital component of social/communication goals: shared interests and having fun.

Think about your own friends. Who are they? What do you talk about? Isn’t it true that the people who become our friends are those who have similar interests and are likely people we met while engaging in our favorite activities? Aren’t common interests and experience the mortar that binds people together in a relationship? How much of our conversations are centered on that common denominator or in recollecting a shared meaningful experience? I think that too often our kids are expected to interact with peers who have only one thing in common – the fact that they have social/communication deficits. Does that make sense? How is that fun?

The role of common interests and experiences has become clearer to me since Kyle graduated from high school and is more free to pursue his focused interests, which include trains, racing and the Blue Ridge Parkway. He works two mornings a week and uses the money he earns to purchase tickets for excursions in North Carolina, Georgia, Tennessee, West Virginia and Florida. His annual pass allows him to ride the Great Smoky Mountain Railway very frequently.

Several years ago, I was waiting for Kyle at the station. The train arrived and I watched a steady stream of passengers exit the train and head toward the parking lot. Where was Kyle? An uneasy feeling was quickly turning to panic. Then, in amazement, I watched from a distance as he strolled at a leisurely pace with his fellow passengers. I couldn’t hear the words, but I could see him nodding his head, listening and responding with apparent ease. He was smiling and they were too! He had found “his people” and it had happened quite naturally.

When Kyle was first diagnosed, learning everything I could about autism seemed to be the most important thing. Maybe that was true at the time. But now I think it is time that I learned more about trains and racing and the Blue Ridge Parkway. Kyle has autism, but that fact does not define him. The things he is interested in and passionate about are certainly just as important as the fact that he has autism, don’t you think? And since we want to share his life, his father and I are broadening our interests to include his.

Recently, when we were heading home from a quick trip to Florida to visit relatives, Kyle suggested an Amtrak excursion from West Palm Beach to Jacksonville. He wanted to buy a ticket and he invited his father to join him. Since we were headed in that direction anyway, I dropped them at the station and drove alone to Jacksonville, thinking about my son who is enjoying his life, making friends and talking to us more – probably because it has become more fun for all of us.

Kathleen Dolbee is a mother, teacher, and advocate who will be presenting at the Autism Society of North Carolina Annual Conference on March 31. She will present “Creative Ways to Teach Social Thinking and Social Skills for Home and School.”

For people currently receiving CAP IDD (MRDD) Waiver services the Autism Society of North Carolina previously provided an update here  about major changes that were expected to take place November 1, 2011.  It is our understanding that the Division of Medical Assistance and Division of MHDDSAS have requested an extension of the current waiver until January 1, 2012.

What this means for you:

• Changes did not take place November 1, unless a revised and approved plan is in place and you want to keep it as it was approved.
• If your plan was approved and you want it changed back to reflect the changes effective January 1, 2012, call your case manager to make those changes.
• Plans currently sent in for revision based on the anticipated changes, but not yet approved, should automatically date the changes for January 1, 2012.
• Plans that are up for regular renewal or a revision not mandated through the new waiver should proceed with renewal/revision as normal between now and December 31, 2011.
• Please stay in contact with your case manager.
• If you have trouble, see here on legal recommendations.

This blog post was submitted by the ASPIRE Research Team at

Approved treatments for autism

Although most readers of this blog will already know, it is still important to note that autism is now considered common. Recent estimates indicate a prevalence of between 1 in every 110 to 1 in every 38 individuals. Luckily, funding for research focused on the treatment of autism has been a priority of the US Congress, the National Institutes of Health and advocacy groups. This funding has been instrumental in conducting rigorous controlled trials of several psychiatric medications. However, only two medications have been approved by the FDA (Food and Drug Administration) to treat irritable and disruptive behaviors in children with autism. These two drugs are Risperdal® (risperidone) and Abilify® (aripiprazole). These drugs are in a class of medications called antipsychotics. Although these are the only two drugs officially approved by the FDA, it is common practice for physicians to prescribe other similar medications such as Geodon® (ziprazidone), Seroquel® (quetiapine) and Zyprexa® (olanzapine).

What has the research told us about these medicines (antipsychotics)?

Approximately 30% of individuals with autism are treated with antipsychotics, with greater rates of treatment during adolescence. The truth of the matter is that these medicines are commonly prescribed because they are very effective in managing symptoms such as irritability, mood swings, aggression and other aspects of behavior. Research has also told us that individuals with disabilities have higher rates of overweight and obesity than individuals without disabilities in both pediatric and adult populations. This is particularly striking because of evidence that antipsychotic medications are associated with very dramatic weight gain in youth. For instance, a recent study of more than 300 youth treated with antipsychotics for the first time found mean increases in weight between 18 to 10 pounds over the first 11 weeks of treatment. There is also evidence that weight gain continues although at a somewhat slower rate with extended treatment. Several studies have also identified increased rates of high cholesterol and triglycerides, high insulin levels in the blood, and elevated liver enzymes in youth treated with antipsychotics.

Bottom line

Although these types of medicines are considered appropriate for children and adolescents, they do not come without risks of side effects. One of the biggest risks of taking these medicines is weight gain. Weight gain in children and adolescents can lead to major problems later on in life. Some of the common problems are high blood pressure, heart disease and diabetes.

What is being done now?

Researchers at the University of North Carolina at Chapel Hill are currently conducting a research study to address these issues. Dr. Linmarie Sikich and her team are currently looking at 3 different strategies to reduce weight gain that is associated with these types of medicines. They are looking for participants who are willing to be in the study for 7 months and come to UNC Hospitals several times. Study related psychiatric care is provided by doctors who specialize in these types of illness and is provided at no cost to the participant or his/her insurance company. In fact, compensation for time will be provided.

If you are interested in finding out more information about this research study, please contact the ASPIRE Research Team by calling us at 1-800-708-0048 or email us at aspire@unc.edu.

Imagine using this approach in a driver’s education class. They’d put you in a manual transmission car with no training. Then they’d turn on the engine and shove the car into the street, expecting you to learn to drive from the helpful suggestions yelled at you by other drivers.

Anybody think that’s an optimal learning situation?

To give us parents the benefit of the doubt, we don’t use poor teaching tools on purpose. We do what seems obvious at the time. But, looking back, I’m sort of amazed that I kept trying the same thing for so long when it wasn’t getting results.

Even though I knew my son had Asperger Syndrome and that he had trouble learning social skills intuitively, for years I still tried to teach him by correcting him after the fact. Or rather, instead of teaching him, I corrected him. And got exasperated when he committed the same transgressions over and over again.

Well, I finally learned that if a door is locked, you have to try another one. In this case, the other door is explaining and demonstrating a social skill and having your kids practice it before they need it. And it pays off.

A little while back, I introduced my 20-year-old son to another adult. My son said, “How do you do?” He made eye contact and listened to what the person said — and never once mentioned Star Wars. He even said, “It was nice to meet you,” before he left. I thought back to ten years ago, when this conversation seemed like an impossible goal. But who was it impossible for? Once I tried the right door, the skill came through.

People with Asperger Syndrome can learn manners and social skills. Of course, how much they learn depends partly on their individual challenges and abilities. But it also depends on how we teach the lessons we want them to absorb.

I have a friend who tells a story about her son using a “script” he’d learned in social skills class when he happened to be seated next to a younger child on an airplane. As the mother of a child with AS, my friend was understandably nervous about how this would work out. It worked out great, because her son asked the other child a series of questions –and listened to the answers.

Hi, what’s your name? What grade are you in? What’s your favorite subject? Etc.

My friend knew this was a prepared script, but for the other child, it worked as a natural conversation. It helped the child with Asperger Syndrome interact in a comfortable way with another person — and it hopefully was a step toward helping the son learn more about conversation and preparing him to depart from the script.

Many of the manners and social skills we want our kids with Asperger Syndrome to learn can be taught, but we need to teach and practice these skills “frontwards,” before they’re needed. And practice is a key to success. A little regular practice time can help embed social skills so they become second nature to our kids.

There’s no adequate way to describe how you feel when you see your son or daughter demonstrate good manners in the real world with no prompting from you.

Sometimes things are only temporarily impossible.

ABOUT THE AUTHOR: Dan Coulter is the author of the video, “MANNERS FOR THE REAL WORLD: Basic Social Skills.” You can read more articles on his website: www.coultervideo.com.

Copyright Dan Coulter 2004 Used by Permission All Rights Reserved

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.

[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.

Good News!

The Combating Autism Reauthorization Act, S. 1094  and H. 2005 are moving forward. Two weeks ago the Senate bill was approved by the U.S. Senate Health, Education, Labor and Pensions Committee; North Carolina Senators Burr and Hagan both attended the meeting. And today, House Majority Leader Eric Cantor announced that the House Combating Autism Reauthorization Act H. 2005 will move to the House floor as is. This is great news and we appreciate everyone’s advocacy to get this far! The work is not over yet: the 2006 Combating Autism Act sunsets on September 30th and it needs to be reauthorized in the next 14 days.

You can help ensure its passage:

1) Call or email your own Congressional House Representative and ask that they support the House version of the Combating Autism Reauthorization Act, H 2005. If you live in NC District 1 or NC District 8, Representatives G.K. Butterfield and Larry Kissell, have already signed on as co-sponsors – please thank them. We need the rest of the North Carolina Congressional Representatives to vote YES on this bill. In particular, Rep. Sue Myrick, NC District 9 and Representative Heath Schuler, NC District 11 were not in office in 2006 when the first bill was authorized. It’s crucial that they hear from people in their districts.

Don’t know who represents you in Congress? See Congressional Representatives  for more information.

Talking points for your message:

• You are a constituent.

• You support the Combating Autism Reauthorization Act, House bill 2005.

• You want them to vote in favor of the bill when it comes to the House floor (If they are already a co-sponsor, thank them for their support.)

• If you are a family member or self advocate, consider sharing a short version of your story of living with autism spectrum disorder and how this act can help you and others.

2) Share this information with your friends, family and neighbors and ask them to contact their Congresspersons as well.

(* Reps Ellmers and Schuler were not in office in 2006)

The Combating Autism Act, originally enacted in 2006, allows for significant federal appropriations, including expanding research and coordination at the National Institutes of Health, increasing awareness and surveillance at the Centers for Disease Control & Prevention, and expanding the interdisciplinary training of health professionals to identify and support children with ASD and their families. The bill is due to expire on September 30, which means an immediate hard stop of federal funding if action is not taken. In the years since it was enacted its provide 1 billion in funding for research on autism; during that time we have seen significant advances in understanding autism, but unfortunately have also seen a rise in prevalence, now estimated by the CDC at 1 in 110 children, the incidence in NC is even higher.

Federal Advisory Panel Calls on the Obama Administration to Limit Seclusion and Restraint

Disability Scoop reported September 8th that Interagency Autism Coordinating Committee (IACC) called on Federal officials to establish regulations, increase data collection and promote alternatives to seclusion and restraint in schools and other settings. You can read the full story here.

The White House Wants Your Ideas for Topics to Be Discussed During Monthly Disability Calls

Each month, White House staff who work on disability-related policies host a public, live-captioned conference call to keep the public better informed about important developments on many different disability issues. These calls also connect you to leaders in the federal government who work on these issues. Over the past several months, monthly conference calls have featured discussions on accessibility, employment, education, technology, emergency preparedness, transportation, healthcare and the federal budget.

The White House is now offering the opportunity for you to suggest topics you’d like discussed during these calls. Send in your ideas about subjects for discussion, as well as the federal officials you’d like to hear from on these subjects, by visiting this page.

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.)

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