Don’t Underestimate Me!

This article was contributed by Leica Anzaldo, Training Manager for the Autism Society of North Carolina.

Danny track“Good morning everyone, I’m Danny. I want to tell all of you thank you for helping me and talking to me even when you knew I could not find the words to talk back. Having autism is very hard and lonely. It’s like being trapped in your own head. You understand what is going on but can’t participate. I have had a wonderful time at Lakeshore Middle because of all of you. I’m sure none of you will truly know how much you have affected my life. I hope to see all of you at Lake Norman High School.

Have a great summer!”

This was the speech given during 8th grade graduation by Danny, the son of my neighbors and friends, Sue and Rich. Many of the kids at Danny’s school didn’t even know he could talk and certainly didn’t know that he was so aware of all of them. Needless to say, there wasn’t a dry eye in the place, and many new friends were made as a result.

Danny and his family regularly inspire me to continue my work in the field of autism but also teach me things I never would have considered if I didn’t have them in my life. I am truly lucky.

Danny was diagnosed as “severely autistic” when he was almost 2 in New Jersey, where his family was living at the time. But Rich and Sue knew something was wrong much earlier than that. They remember how Danny would lie quietly on the floor for hours, pushing one of his trains around the corner of a wall until it would disappear. Then he would peek around that corner with a look of amazement that the train was still there. These rigid patterns of play were consuming. Not only that, Danny wasn’t seeking out the attention of his parents like most 1- to 2-year-olds do fairly constantly. Danny was beginning to use some words, but they were mostly from songs. He would never ask for anything – even with body language – nor would he make eye contact with others. He also had extreme bouts of crying when in crowds or when exposed to smells such as perfume. These are all very common early experiences for children with autism.

The family moved to New York, where Applied Behavioral Analysis (ABA) services for Danny were immediately available. He began receiving ABA therapy for 25 hours a week in their home, plus physical, speech, and occupational therapies from ages 2 to 4. He was then enrolled in a school for kids with autism. The school had a curriculum based on ABA interventions and very low student-teacher ratios, and Danny attended until he was 12. This intensive therapy provided the platform for learning that Danny needed, but this isn’t the only contributing factor to Danny’s success. His family and their approach to his autism were and are key to moving Danny forward.

Sue and Rich never let Danny’s autism get in the way of trying new things, pushing him outside his comfort zone and treating him much like their other two children. They say it was hard because he was fairly nonverbal and they were never sure how much Danny was understanding. However, it was so important at an early age not to allow Danny to develop rigid patterns of play or behavior. For example, he was very focused on Thomas the Tank Engine as a child and made elaborate tracks throughout the house but didn’t want others to play with “his” track. Sue and Rich would walk by and change a little bit of the track or take a piece away, getting Danny’s attention. They would then turn his play into a social game of chase or hide the track, waiting for Danny to vocalize “where is it.” Then they would show him the piece and encourage him with “come and get it”; a game of chase and tickling would ensue.

Now mind you, Danny never responded with aggression, so this may be very different from how other children respond. But even during my own observations, Danny uses the most language when he is pushed to the brink of frustration, and this is when his language is clearest and most precise. Rich teasingly puts Danny in a bear hug and asks him a bunch of questions, not letting go until he answered, but in a playful and silly way. It becomes a game, with Danny saying “no, no, no” but with a smirk on his face.

They also exposed Danny to new experiences early, such as going to the dentist at a young age and flying on a plane at age 4. They learned and adjusted based on Danny’s response. Family members always ask why they can’t just stay home for school breaks instead of always making travel plans, to which they answer: Change is important; if we don’t change it up, Danny will stay in his room, isolated, and it will be harder to try new things in the future. It isn’t always easy and is met with resistance, but he participates and usually enjoys whatever has been planned.

Small accommodations are also really important, such as having headphones and music available for Danny when he has to wait, is in a crowd or noisy environment; having access to a movie player because movies are a big part of Danny’s life and something he looks forward to at the end of the day to unwind; boarding the plane last and exiting first so he isn’t pushing everyone out of the way; and most importantly, making sure the people around Danny know he has autism and what that means. They have always been very upfront with people in the community that Danny has autism, sometimes dressing him in shirts that say “got autism.” This helps others to not make assumptions about him based on his behavior but instead ask questions. For example, on a plane ride, Sue said loudly to the person in front of her as they were deplaning that she was sorry if Danny had been kicking his seat, but he has autism and doesn’t always understand how what he does impacts others. She said this so the other people on the plane knew, too, as Danny was making loud noises and being a bit impatient. It isn’t always easy to say that your child has autism, but Rich and Sue feel very strongly that the more people know, the better. Raising awareness and cultivating compassion in others is a huge part of their efforts for Danny. They have always gone to every classroom Danny has attended to make sure his teachers and classmates know who he is, that he has autism, and what that means for him.

Danny moved to North Carolina when he was 12 and began middle school with his sister Mickale. Mickale is also a huge advocate for Danny, making sure all her peers know Danny and understand autism. She is a beautiful person inside and out, whose relationship with her brother has affected so many other students in the area where we live. She accepts Danny’s big bear hugs in the hallway and never seems to be embarrassed by Danny’s autism, instead embracing it as part of who he is. Danny really started to flourish while in middle school. He was in a self-contained resource room except during chorus. They also tried mainstreaming for gym, but the sensory input was too much. (He would hold the locker room door closed because the other students were so loud and he wanted to get down the hall before them.) Sue also signed Danny up for the swim team and cross country, making sure all the coaches and team members knew who Danny was and that he had autism. I witnessed Danny at both and was so moved by the fact that even though Danny wasn’t the fastest nor did he always understand the expectations of each event, every person in that pool or on that course was cheering him on until he finished – even the other team.

This year, Danny started high school at Lake Norman High. He is fully included, and his parents were really nervous, but Sue met with Danny’s teachers and school staff to determine the best option for him. They assured her that he could do it and that they would be there to support him along the way. To prepare, Danny’s parents took him to check out the school layout and walk around the school preparing him visually for what was to come. Sue also downloaded a map of the school and highlighted and numbered all the rooms where Danny would go. She made a schedule for Danny that he keeps inside the front cover of a notebook with his classes, teachers, and the numbers that correspond with the map. She made a cheat sheet for inside the back cover that includes the smaller steps, such as when to go to his locker and what to do once he gets there: open, put cross-country bag in locker, close and lock, then go to homeroom, etc. She also showed him once how to unlock his locker and then had him do it four times to avoid this frustration in the future that she knew would throw off his day.

Most importantly, once again, she has made sure that people in the school know Danny and understand autism. He is running cross country at the high school level now, and practice began well before school started. Mickale also runs and has made sure the other runners look out for Danny at school and talk to him. Sue and Rich have had several students approach them and say how cool Danny is and that they “have his back.” And Danny feels like such a part of the team that after practice one night all the kids jumped in the lake and Danny was right there with them. Sue couldn’t believe it! Sue, Rich, and the rest of the family have done an incredible job making a community for Danny. Every neighbor on our street is comfortable around Danny, talking to him and inviting him to parties, boat rides, and other activities in which all the other kids are included.

I hope you don’t find this too idealistic, but I really wanted to show how true “inclusion” can look for people with autism, even if they don’t have services. Danny still has autism. A lot of his talk is movie talk, he eats the same thing almost every night (though he makes it himself), and he still doesn’t have what we would identify as a group of friends. But Danny is a genuinely happy teen who is treated by others as one of the guys. He surprises me every time we are together, and I cherish the fact that my own children are developing such compassion just by having this family in their lives.

Leica Anzaldo can be contacted at 704-894-9678, ext. 1603, or lanzaldo@autismsociety-nc.org.

Recognize Your Direct Support Professional

This article was contributed by Kerri Erb, Senior Director of Quality and Programs.

Direct support professional (DSP), community skills instructor (CSI), habilitation technician (hab tech), CAP worker – whatever their names, these individuals should be recognized. Every day, they work one-to-one with individuals with autism, teaching skill acquisition and supporting them in reaching their goals. They become trusted friends, natural supports, and honorary members of families.

DSP graphicNext week, especially, we will take time to thank them during Direct Support Professional Recognition Week. The Autism Society of North Carolina employs hundreds of direct support professionals; without their dedication and continued efforts, many individuals on the autism spectrum and their families would not have needed support services. Some come to work for ASNC for a few months, others stay for a lifetime.

DSPs are the largest percentage of ASNC’s employees, and we learn how to improve what we do as an organization and as a system from them. Many full-time ASNC employees and managers got their start in the field through direct support work. Because of this understanding throughout the organization of the importance of DSPs, our ultimate hope is that an individual with autism’s life is improved in some way through their work.

Each year, ASNC honors one of our DSPs with the John and Claudia Roman Direct Service Award. The John and Claudia Roman Direct Service Award was endowed by Lori and Gregg Ireland to honor Christine Roman, the direct service professional who worked with their son, Vinnie. It was named for her parents, John and Claudia Roman. In their honor, we are taking nominations from families served by the Autism Society of North Carolina for this award. For more information on nominating your ASNC DSP for this award, please email Kerri Erb or Kari Johnston, Director of Services.

In recent years, we have recognized Alan Cohen (2013), Tanya Ahner-Mejia (2012), Lori Sweeney (2011), and Emily Bennett (2010) with this award for their tireless dedication, for their willingness to go above and beyond, and for making a real impact in the lives of individuals with ASD and their communities. They are the ones who make dreams come true.

We invite you to give your DSP a pat on the back, or make a donation in their honor, for a job well done this week (or any week).

Kerri Erb can be reached via email at kerb@autismsociety-nc.org or by phone at 919-865-5053 or 800-442-2762, ext. 1102.

State Wants to Hear from You on IDD Services

The NC Department of Health and Human Services is seeking public input as it works to create a better way to provide services for people with intellectual and/or developmental disabilities.

The Division of Mental Health Developmental Disabilities and Substance Abuse Services and the Division of Medical Assistance will be holding listening sessions across the state. Officials will talk briefly about IDD services and the direction that North Carolina is headed in, but then they want to hear your experiences, suggestions, and concerns.

 

Meetings are scheduled around the state:

 

9/3 – Winston Salem

6:00pm-8:30pm

CenterPoint Human Services

4025 University Parkway

Winston Salem, NC

 

9/4 – Hickory

6:00pm-8:30pm

1985 Tate Blvd SE, Suite 529

Hickory, NC

 

9/17 – McDowell County

Location TBD

 

9/23 – Triangle

6:00pm-8:30pm

Creedmoor Baptist Church

6001 Creedmoor Road

Raleigh, NC

 

9/24 – Charlotte

Location TBD

 

9/29 – Southern Pines

6:00pm-8:30pm

First Health Moore Regional Hospital Conference Center Auditorium

9305 NC Hwy 211

Pinehurst, NC

 

10/7 – Greenville

6:00pm-8:30pm

Agricultural Center Auditorium

403 Government Circle

Greenville, NC

 

10/8 – Elizabeth City

6:30pm-9:00pm

College of Albemarle

John Wood Foreman Technology Building

1208 North Road

Elizabeth City, NC

 

10/13 – Wilmington

6:00pm-8:30pm

Coastal Care Corporate Office

3809 Shipyard Blvd

Wilmington, NC

(Will video conference in their Jacksonville location and possible their Morehead City location)

 

10/15 – Haywood County

Location TBD

 

10/20 – Lumberton

6:00pm-8:30pm

Eastpointe Office

450 Country Club Road

Lumberton, NC

 

10/23 – Rocky Mount

6:00pm-8:30pm

Eastpointe Office

500 Nash Medical Arts Mall

Rocky Mount, NC

Surviving School in a Nutshell

Boy_Backpack

This article was contributed by Kim Tizzard, Autism Resource Specialist and mom to a son with autism.

The beginning of a new school year has somehow snuck up on us. For many, the uncertainty of how our child’s needs will be met can be a source of angst. Like a video loop, the same thoughts would keep me up at night: Will they hear my voice when my son may not have one? If they do, how will it be interpreted? How will the IEP be implemented? What if he shuts down or has a tantrum? And the list goes on.

My son is now 18 and entering his senior year of high school (Occupational Course of Study). We have survived! I have learned along the way that 90% of my concerns were truly answerable, but so much depended on how they were communicated. So, I am imparting some of my “tried and true techniques” in the four steps below.

Step 1: Take a deep breath!

Step 2: Create your own profile of your child. I cannot tell you how many regular education teachers and related service professionals (speech and occupational therapists, art teachers, etc.) expressed their appreciation for having received this. My profile gives them a quick look at what to expect from my son. Yes, teachers should look at the IEP or IEP-at-a-glance if your child has one. But let’s be honest: sometimes this information may take a while to get into their hands. If your son or daughter does not have an IEP or 504, that is all the more reason to create a profile. Ours is called “Trevor in a Nutshell.” I send it out a few days before school starts or at the onset of a new semester with a short email of appreciation from me. I also tell teachers to feel free to contact me with any questions or concerns.

Here are a couple of links to helpful profile examples:

I modeled “Trevor in a Nutshell” on a profile that a dear friend and fellow Autism Resource Specialist created for her son. It is a ONE-PAGE information sheet that includes the following:

  • Strengths, interests (usually great motivators)
  • Dislikes (example: he hates for stuff to be erased)
  • Strange and inappropriate things he may do (example: blurting out answers, holding his ears)
  • Things that are difficult

Last but not least, I list the category “What to Do,” which is a place to list some helpful hints and strategies that help his day run more smoothly. Some examples are letting him twist a straw during lectures and movement breaks every 45 minutes.

I always close with letting the “reader” know that I am available and will help anyway I can. This may be by providing visual supports such as his daily schedule, typed and placed in the front of his binder, or a social story for a portion of his day that may be difficult for him. I will say that oftentimes, we need to take it as it comes and brainstorm together – which leads us to the next step.

Step 3: Foster a good, open dialogue with teachers and staff who may have contact with your son or daughter.

The old phrase about getting more with honey than with vinegar is so true. Taking the first steps toward helping your child’s teacher understand him or her a bit better is always a good thing. I would also suggest that you then take a step back; give the staff four to six weeks to get to know your child. At that point, you could schedule a parent/ teacher conference to discuss how things are going. It can then be determined whether a few things need to be tweaked, such as on a 504, or even whether an addendum may need to occur to the IEP, if there is one in place.

Regardless of whether or not your child has a plan, some form of agreed-upon communication should be established. Examples include a communication notebook, a school agenda, or a weekly email that goes to and from school. Talk to your child’s teacher to establish a communication routine that will work for both of you. For your middle or high school student, find out what is already in place at the school. Usually teachers and staff keep a website updated with homework and test schedules.

Step 4: Take some time for yourself! Connect with others. ASNC offers parent support groups and chapters across the state; click here to find the one closest to you.

I have coached countless parents with school-age children through this process. The success rates and responses from their children’s educational teams has been overwhelmingly favorable. But occasionally, roadblocks arise. If you still feel as if your voice or your child’s voice is not being heard, then I would encourage you to contact your local Autism Resource Specialist for ideas. In addition to all being parents of children on the spectrum, we also have a combined wealth of knowledge. We are here to help.

Kim Tizzard can be reached at ktizzard@autismsociety-nc.org or 919-865-2269.

Adventures in High-Functioning Autism Behind the Wheel

IMG_0046_boy-driving

This article was contributed by Nancy Nestor, ASNC Autism Resource Specialist.

How do you know what your child is capable of? For the past 13 years, since my son was diagnosed with high-functioning autism, my husband and I have asked ourselves that question repeatedly. My son has always been a kid who has taken an active part in choosing his own path. As much as possible, my husband and I have tried to allow him that independence, but more often than not, we have discovered a truth. Some goals are attainable, some take extra teaching and time, and other goals may be off the table for a long time, or for good. Getting a driver’s license could be one of those things.

A few years ago, my son watched a childhood friend, who lives next door, get his license. That set him on a mission to do the same thing. At that point, we really were not sure if driving was a reasonable goal for him. He could ride a bike and follow the rules to ride on the street. With a lot of work, the visual perception problems we had seen in the past had improved to the point where they were less of an issue, so he was able to maneuver his bike without hitting things. He had worked very hard to improve his reading, but were his skills good enough for him to get his license?

We told him there were many things that would have to be done before we could consider letting him drive. He had to show us he could handle driving off-road first, which meant driving the riding mower after he mastered the push mower. Using visual signs as cues, we helped him through that step, which took almost two years. This was a funny story in itself. I am sure pilots flying into Charlotte Douglas thought a drunk was loose on a riding mower in the huge field our church owns as my son drove randomly around the field while following the curvy pattern I had set up for him. During that time, he also practiced driving go carts and four-wheelers, which he thoroughly enjoyed.

In school, he signed up for the book part of driver’s education and passed it. That was when things started to get interesting and we hit what we thought was a real roadblock. Out of the blue, I got a phone call from Sergeant “Smith” from the DMV, who immediately started asking me questions about my son: What is his diagnosis? What medication is he taking? Is he mentally ill?

I am sure there was blue smoke coming from the roof of our house! I was livid! How could a stranger call me and ask such personal questions? I did not pass up the opportunity to let Sergeant “Smith” know that I found his questions demeaning. How dare he question my judgment as a parent! He did not know my son. How dare he think my son was not capable of driving? How dare he call with such personal questions? How did I even know he was a police officer anyway?

This reaction did not faze the sergeant. He simply told me if I wanted my son to get his permit, his pediatrician would have to fill out a medical form. Still pretty angry, I asked him whether the form was because he had autism, and he said that was not the case. Apparently, a few days before in driver’s ed class, the DMV officer had come to do vision screenings on the students and gave them a form to fill out. On the form, a question asked whether the student had ever had a seizure. Being accurate about his health, my son said yes. It is true, he had a seizure when he was six and took anti-seizure medication for years. I told Sergeant “Smith” that I was sorry for being so angry, but it made sense that there would be a protocol for health issues which might affect driving safely. He confirmed our address and told me a form would be sent to our home, which would have to be filled out and sent back to the DMV in Raleigh within a month. It would have been nice to know ahead of time that I would be getting a phone call from the DMV, but I guess that is one of those unexpected pleasures of life.

The form came within a week, and we got it filled out in time. My son had passed a hurdle, and we were on our way to the next adventure. My son’s doctor knew driving would be stressful and he would do better if he could receive one-on-one instruction. He recommended a company that specialized in teaching anxious drivers.

My son completed the required hours and the instructor thought he was capable of driving, but advised us to give him plenty of time and buy a passenger-side brake so we could be safe while he learned to master driving. On the third try, he got his permit. He has been driving for almost a year now, following the rules of his permit. He can only drive with a parent in the passenger seat, and he must fulfill at least 100 hours of driving before he can get his license. He has more than fulfilled his 100-hour commitment and we rarely use the brake, but we are in no hurry to let him drive alone. The DMV personnel told us that we can renew his permit as many times as we want. He can drive with his permit for years until he can handle any situation that might come his way. My son will get his license in time, but it will be when he is ready, and he is happy now to drive with his permit.

By choosing to let him drive, we have had to consider other factors as well, such as guardianship. North Carolina law states that when parents acquire guardianship for their adult child, they must declare their child incompetent. There are levels of guardianship, but regardless of the levels, if someone acquires guardianship over their child at any level, the clerk of court for the county must notify the DMV, and the person under guardianship is no longer permitted to drive.

Because of my son’s challenges with decision-making, we will not seek guardianship, but will use other legal methods, such as a durable power of attorney and a medical power of attorney to provide him the support he needs. Of course, over time if we see that he is not capable of becoming a safe, independent driver, then having a driver’s license will be something we will not consider. It may be an unattainable goal for him in the long run, but in the meantime, we will celebrate the progress made.

If you need advice on making decisions about your child’s independence, please contact your regional Autism Resource Specialist. Find one here.

Nancy Nestor can be contacted at nnestor@autismsociety-nc.org or 704-894-9678.

Legislative Wrap-up 2014: Education Policy

This article is the last of several wrapping up the 2014 legislative session. 

The Autism Society of North Carolina’s focus on education continued to highlight improving education for children with disabilities in public schools while also offering options to parents who need to find different academic settings.

Public Education: Per-student funding was not changed for special education in public schools. Public school teachers will see 7% raises on average, though the raise will vary from1% to 18%, depending on a revised pay scale that builds longevity pay into the pay scale rather than adding it separately. To reduce class sizes in kindergarten through third grade, $41 million was added for additional teachers. Cuts to local educational funding include teaching assistants ($130 million recurring, $24 million non-recurring), textbooks ($900,000) and transportation funding ($8 million). Local school districts are given some flexibility in how they implement these cuts.

Department of Public Instruction: The NC Department of Public Instruction received a 10% funding cut and will eliminate 50 positions, including some in the Division of Exceptional Children (which serves children with disabilities), the office of early learning that assists hearing and vision impaired children, positions that support schools for the deaf and blind, in IT services, and positions that support struggling schools, accountability, and other areas.

H712 Clarifying Changes to Scholarship Bill: Last year, the General Assembly passed legislation to replace the tax credit for children with disabilities that was repealed with the passage of tax reform legislation. The law passed last year permits parents or guardians of children with disabilities to apply for scholarships up to $3,000 per semester for families who enroll their child with disabilities in private schools. This year, ASNC and other groups worked with the General Assembly to pass clarifying legislation for the scholarship to:

  • Clearly define a child with a disability
  • Ensure that the DEC 3 determination of a disability is the standard for determining eligibility for the scholarship so that an IEP need not be developed every three years to continue to qualify for the scholarship when a child has already left the public school system.
  • Define educational technology in a way that ensures that it keeps up with new technology and allow educational technology reimbursement to be part of the scholarship program.
  • Clarifies that students who are homeschooled may receive reimbursement for “related services” and educational technology as long as they meet the requirements. Note that recent rules changes from the NC Education Assistance Authority (NC EAA) confirm that different related services may be combined to reach the minimum 75 days of required services during a semester to receive reimbursement.
  • Requires the NC EAA to place information on its website advising families that placement in non-public schools ends a child’s rights to disability-related services under IDEA.
  • Requires the State Board of Education to ensure that local educational agencies are complying with the requirements to do evaluations and re-evaluations in a timely way and to comply with the requirements of the scholarship program.

Study Vocational Training in Persons with IDD: As noted in our budget update, the budget special provisions include language from H731, Study Vocational Training in Persons with IDD. Section 10.4(a) of the budget authorizes the Joint Legislative Oversight Committee on Education to study issues related to vocational training for individuals with intellectual and developmental disabilities, including model programs for training, developing vocational expertise, and job readiness; enhancing employment outcomes; barriers to employment; establishing partnerships between community colleges, universities, NC DHHS, VR and community organizations that offer job training; policies for ensuring students are prepared for higher education following high school; and policies for job training as students complete secondary school.

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.

Closer Look: NC Budget Appropriations Act of 2014 and Medicaid Reform

This article is the second of several wrapping up the 2014 legislative session. Look for more details on the budget and issues related to education in coming days. 

The NC General Assembly passes two-year budgets during its long sessions in odd calendar years. During the short sessions, like this year, they make adjustments to the budget for the coming year. The budget documents are in two parts: 1) the actual bill listing general funds appropriated to each department/area along with special provisions, policy changes that direct the use of the funds. 2) the “money report” or conference report that provides some detail about funds that were added or removed from each department’s budget. Links to the budget documents can be found in the left column at www.ncleg.net.

ASNC continues to advocate for increased access to quality services and supports, including for those on waiting lists and those who do not have access to health insurance or services through their health insurance. The budget includes a provision requiring the state to develop 3,000 slots in a new intellectual and/or developmental disabilities “supports” waiver, but does not yet allocate funds as it will take some time for the waiver to be developed and approved. There are new funds for crisis stabilization services across disabilities, but overall no new funding for programs specific to people on the autism spectrum. The General Assembly is still considering an “i” option for a basic level of services to be developed, possibly to replace existing personal care services (outside of the Innovations waiver).

Health and Human Services Budget

  • Medicaid: The budget appropriates $136 million in non-recurring funds to address the current year Medicaid shortfall and cuts $75 million in recurring funds through rate and payment reductions as well as locating additional cost savings. The budget also establishes a Medicaid Contingency Fund with $187 million to help cover potential shortfalls in the Medicaid budget for the 2014-15 fiscal year as the result of increased costs or delays in getting changes to the state’s Medicaid program approved by the federal government.
  • Special Assistance: The budget revision decouples Special Assistance from Medicaid, meaning that individuals who qualify for the State County Special Assistance program are not automatically qualified for Medicaid. Special Assistance funding helps low-income elderly and disabled individuals pay for room and board in residential facilities including adult care homes/assisted living, family care homes, and group homes/supervised living. It also can help disabled individuals living at home to remain at home while receiving services rather than move to a facility. It is not yet clear how many people will lose eligibility, but it could be 3,000-5,000. The budget also drops Special Assistance eligibility to 100% of the poverty level (around $970 per month) beginning November 1, but grandfathers in current recipients at the previous level of 125% of poverty. This change will be the same across all settings, removing the previous institutional bias in the program, but allowing fewer people to qualify. Eligibility changes require a state plan amendment and approval from the federal government.
  • Child Development Services Agencies (CDSAs): The $10 million cut from the previous budget was retained, but the NC Department of Health and Human Services (NC DHHS) was given the flexibility to determine how cuts to the CDSAs will be implemented. It does not require them to close sites, but does continue the previous budget provision to eliminate 160 CDSA positions by next June. NC DHHS must submit a report to the Joint Legislative Oversight Committee on Health and Human Services identifying which actions they took to implement the cut. The General Assembly heard advocates’ concerns about the closure of CDSAs and did not require closure to meet the targeted cut.
  • Group Homes: The supplemental funding for group homes for people with intellectual and developmental disabilities (IDD) and people with mental illness was extended into this year to help support people living in group homes who lost access to Personal Care Services under Medicaid. $2 million in funds was shifted from unpaid Local Management Entity liabilities to support group-home residents. The special provision attached to other funding requires NC DHHS to submit a long-term plan by April 2015 for residents of group homes who are currently accessing this funding.
  • Crisis: New funds ($2.2 million) in the budget are intended to expand crisis stabilization services. While the services are not specific to individuals with IDD, developmental disabilities (DD) is mentioned along with mental health and SA. Most emphasis is on facility-based crisis and inpatient beds, especially for children and youth. ASNC continues to advocate for the use of these and other funds to expand crisis respite, access to START, and the development of crisis services specific to children and youth with IDD. ASNC continues to work with NC DHHS on understanding the needs of people with autism in crisis and the development of crisis services.
  • Waiver slots: No additional slots were funded, but the budget contains a requirement to design and draft a plan for creating 3,000 new supports waiver slots over a period of 3 years. Each slot would have a maximum budget of $20,000 per year and be intended to target individuals on the registry of unmet needs. ASNC will be working with NC DHHS on recommendations for the new waiver.

Budget Special Provisions

Every state budget has provisions that direct how funds should be used, recommend studies and pilot projects, and otherwise make policy changes. Included in the special provisions are:

  • Study Vocational Training: Section 10.4(a) authorizes the Joint Legislative Oversight Committee on Education to study issues related to vocational training for individuals with IDD, including model programs for training, developing vocational expertise, and job readiness; enhancing employment outcomes; barriers to employment; establishing partnerships between community colleges, universities, NC DHHS, Vocational Rehabilitation, and community organizations that offer job training; policies for ensuring students are prepared for higher education after high school; and policies for job training as students complete secondary school.
  • Study Guardianship System Improvement: Section 12D.3.(a) continues the work started by the Guardianship Study Committee by requiring NC DHHS, NC Department of Aging, and the NC Administrative Office of the Courts to develop a better way to evaluate publicly funded guardians to include face-to-face observation or interviews with the person under guardianship. It requires the development of a model plan to transition wards to alternative guardianship arrangements and also studying the use of care coordination to oversee conflicts of interest when paid providers serve as guardians.
  • Require Guardians to Submit Status Reports: Section 12D.4.(b) requires public guardians to submit a new version of the status report on the ward that includes reports on recent medical and dental exams; performance of the guardian’s duties; the ward’s residence, education, employment, rehabilitation, or habilitation; efforts to restore competency; efforts to seek alternatives to guardianship; efforts to identify alternatives to corporate guardianship; and recommendations for implementing more limited guardianship. The clerk of courts may also order any other guardian to file these status reports, though they are not required in the new stature.
  • Mental Health Medications Management: Section 12H.9 allows NC DHHS to implement new management techniques to reduce the cost of prescription medication to treat mental and behavioral health issues. Initially, NC DHHS must seek out additional rebates from pharmaceutical companies to achieve $12 million in “savings,” but then is allowed to achieve the savings through controls such as prior authorization, new utilization review methods, and “other restrictions.”
  • Personal Care Services Management: Section 12H.10 outlines new requirements to restrict the growth or Personal Care Services (PCS) under traditional Medicaid (not waiver services) including rate cuts, keeping spending at current levels, and planning for redesigning the program. Initially, the budget requires that NC DHHS cut the current rate retroactively to October 1, 2013, as well as implement new rate cuts. NC DHHS must present the legislature with a plan for keeping spending at current levels. Then it requires NC DHHS to retain a contractor to study issues related to redesigning PCS while still meeting the state’s obligations under the Americans with Disabilities Act and the Olmstead decision.
  • Medicaid County of Origin: Section 12H.35 requires NC DHHS to fix problems that come up when a person on Medicaid moves from one county to another. Between now and February 1, 2015, NC DHHS will work with stakeholders on a plan to ensure Medicaid services move with the individual and state laws and policies are changed to ensure the fix is permanent.

Medicaid Reform and Managed-Care Legislation Delayed

ASNC has been monitoring the progress of House Bill 1181, which would change the state’s Medicaid program to having provider-led health plans (accountable care organizations) and private managed-care plans (private MCOs) rather than the current program, which is a mix of state-run, fee-for-service and local government managed capitated for mental health, developmental disabilities, and addiction services (LME-MCOs). The Senate and House versions of the legislation for Medicaid reform differ significantly, and no agreement was made between the chambers before legislators left Raleigh. Senate and House adjournment resolutions both say that the General Assembly may return November 17 to take up the issue of Medicaid reform.

The Senate’s version would move the state Medicaid program to private managed care while allowing for some ACOs or provider-led health plans, which are the main focus of the House’s plan. In addition to having Medicaid services managed by private managed-care companies, the Senate would move Medicaid into a separate government agency run by a seven-member, appointed board. The House’s version would keep the current structure of developmental disabilities services managed by the public LME-MCO system, while the Senate would move all services, health and disability, into an integrated private managed-care model.

ASNC does not have a position on the current proposals for Medicaid reform; however, ASNC has stated previously that any change to managed care should include stakeholder involvement in planning, ensure transparency, retain/reinstate case management, and focus on good outcomes for individuals, including expanded services for the wait list, rather than just cutting costs. The Coalition, made up of advocates for mental health, developmental disabilities, and addictive disease services, of which ASNC is a member, has expressed concerns about the shift away from the current LME-MCO system to private managed care. Because the current LME-MCO system is already capitated and under managed care, developmental disability, mental health, and addiction services are not responsible for increases in Medicaid health-care costs.

NC Health News Report on H1181 Changes

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.

Follow

Get every new post delivered to your Inbox.

Join 3,774 other followers