Public Policy Update

capitol-hill

This article was contributed by Jennifer Mahan, Director of Advocacy and Public Policy.

 

Federal News

American Health Care Act (AHCA) Update

Thank you for calling your US House of Representatives member regarding cuts to Medicaid in the AHCA and the importance of health-care coverage for autism. Your direct advocacy matters! The US House was not able to get enough votes to support the proposed replacement for the Affordable Care Act (ACA). For now, the legislation has been shelved; however, Congress and the Trump administration continue to discuss new proposals around both an ACA replacement and Medicaid funding changes. The Autism Society of North Carolina will continue to monitor federal policy changes. We encourage you to read up on federal proposals; we will be posting occasional updates, alerts, and links to resources about health-care proposals. For more information, read the Kaiser Family Foundation policy analysis comparing AHCA, ACA, and other proposals.

Medicaid is a program that serves millions of people with disabilities and complex health conditions, including people on the autism spectrum. Medicaid Home and Community Based waivers, such as North Carolina’s Innovations and CAP programs, allow people with serious disabilities to live at home with families or in community settings. If you are not already aware of how Medicaid supports people, we urge you to begin reading up on program. ASNC will be posting occasional resources and links to learn more about Medicaid in NC and across the country.

 

Supreme Court Decision about Special Education

The Supreme Court sided with parents who removed their son from school because of an inadequate IEP. In the Court’s ruling, it said that the “appropriate” portion of the “free and appropriate education” guaranteed by IDEA, should be more than just ensuring that children make barely above minimum progress. This appears to indicate legal support for higher standards for IEPs and student advancement: that students with disabilities should be making “meaningful” progress in their education.

What is not clear from the ruling is how schools will help students achieve this progress when IDEA has never been fully funded at the federal level as was promised when the bill passed. Schools are under pressure to serve more special education students with limited resources and a shortage of special education teachers. The Autism Society continues to advocate and the state and federal levels for special-education funding and education programs that address the unique needs of students on the autism spectrum. To learn more, read the National Disability Rights Network statement on the ruling.

 

North Carolina and NC General Assembly News

NC ABLE Update

The NC Department of the State Treasurer has just announced that checking and debit options for NC ABLE accounts are now available. NC ABLE allows people to save money to pay for future or current expenses without losing eligibility for certain government benefit programs.

Signing up for NC ABLE accounts is quick and easy. For more information about how NC ABLE might benefit you or someone you know, see the FAQs.

State Budget

The governor has release his budget proposal outlining priorities for the new administration. The release of this budget also is the start of the legislative budget process for North Carolina. The sovernor’s budget proposal has a number of funding recommendations that could help those on the autism spectrum. Details are below, but include proposals to fund education support, adult guardianship, special assistance, early child development agencies, community-based MH/DD /SA services, complex children’s services, Medicaid services, and Innovations waiver slots.

The NC Senate will start the General Assembly budget process this year by introducing their version of the budget legislation. The General Assembly budget bills are not required to be based on the governor’s proposals. House and Senate leaders are said to be working closely on their proposals, and we expect to see details in the next few weeks.

ACTION: This is a great time to introduce yourself to your state senator and ask North Carolina’s General Assembly to fund much-needed services for autism.

1) If you don’t yet know which state senator represents you, check the second (middle) map on this webpage.

2) Click the link to connect with the district page and find the senator’s email or mailing address. Most are firstname.lastname@ncleg.net, and the address is listed above their email.

3) Write a short, friendly email or handwritten note:

  • Introduce yourself and mention you live and/or work in their district
  • Tell them how you are connected to autism (family, self-advocate, work with, etc.)
  • Ask them, politely, to fund one or more of the governor’s proposals and explain in a sentence or two how that will help someone with autism. For example: “We will be waiting for 7 or more years for services unless Innovations waiver slots are funded.”

This is just one example of what to write; use one that best fits your situation. For more help on advocating, see our tips or our Advocacy 101 toolkit. If you need help figuring out what to say in your email, please contact Jennifer Mahan, our Director of Advocacy and Public Policy, at jmahan@autismsociety-nc.org.

 

Governor’s Budget Proposal Details

Education

  • More School-Based Personnel to Improve Student Outcomes. Establishes a new allotment to be allocated to LEAs based on average daily membership (ADM). Provides $20 million from lottery receipts as flexible funding for LEAs to hire additional school-based personnel who will have a direct impact on improving student outcomes, including assistant principals, nurses, behavioral support staff, teaching assistants, and other instructional support personnel.

Health and Human Services

  • Adult Protective Services/Guardianship. Provides$4.6 million for 2017-18 and 2018-19. Improves the safety of adults who are elderly or disabled and who are subject to abuse, neglect, and exploitation. County Departments of Social Services receive thousands of reports annually and must evaluate and, when needed, provide adult protective services (APS). Additional funding will provide aid to counties to hire social workers needed to reduce APS caseloads and thereby increase quality of service. In addition, there is an increasing need for public legal guardians, who are required when an adult is deemed by the courts to be incapable/incompetent. Funds are provided to increase capacity to provide guardians through local entities.
  • State County Special Assistance. Provides a cash supplement to help low-income, elderly, or disabled individuals remain in their homes or live in licensed adult care homes through the State County Special Assistance program. This program is shared at a 50% participation rate between the state and county. Increased funding is needed to ensure this living assistance benefit is available based upon anticipated enrollment and payments.
  • Invests in Children’s Development Services Agencies. Supports children and families by investing in the Children’s Developmental Services Agencies (CDSA). The 16 regional CDSAs, which serve children who have developmental disabilities and are ages 0-3, require additional staff to comply with federal mandates. Current staff maintain high caseloads that impede their ability to complete evaluations and assessments and initiate services within the required timelines. The request would fund clinical personnel and service coordinators. ($2,541,482R FY17-18 $6,397,430R FY 18-19)

MH/DD/SAS

  • Targeted Reinvestment of Community Services Funding. The base budget increases community services funding by $152.8 million on a recurring basis. Of these funds, $105.8 million in FY 2017-18 and $83.4 million in FY 2018-19 will be allocated to the Local Management Entities/Managed Care Organizations (LEM/MCOs) to meet the service needs of their catchment areas. The remaining balances, $47.0 million in FY 2017-18 and $69.4 million in FY 2018-19, will remain in the community service system, but targeted re-investments to address emerging service needs including those for dually diagnosed children (I/DD and MI), and local in-patient bed capacity. Other targeted investments include support for Innovation waiver slots and housing and supported employment pursuant to the settlement with the US Department of Justice.
  • Disability Rights of North Carolina Settlement – Specialty Treatment and Assessments.

Funds the department’s settlement agreement with Disability Rights NC. The agreement will build system capacity to better serve children with a dual diagnosis of intellectual/ developmentally disabled (I/DD) and behavioral health needs. The request will fund comprehensive assessments and services, to include home health care, rehabilitative and personal care services, and an outpatient clinic at the Murdoch Center. (This is funded through the targeted reinvestment of community services funding in the base budget.)

Medicaid

  • Medicaid Rebase. Provides funds for changes to enrollment, utilization, costs, rates, and services associated with the Medicaid program. This recommendation reflects the amount of change from the base budget to fund the current Medicaid program in the upcoming biennium. This would include funds to address autism behavior services under Early Periodic Screen Diagnosis and Treatment requirements (EPSDT).
  • Expand DD Innovation Waiver Slots. Provides funds for changes to enrollment, utilization, costs, rates, and services associated with the Medicaid program. This recommendation reflects the amount of change from the base budget to fund the current Medicaid program in the upcoming biennium.
  • Extend DD Innovation Waiver Slots to Lower-Acuity Individuals. Fully funds an additional 1,000 NC Innovations waiver slots, effective January 1, 2018, for individuals that do not need the full range or intensity of services offered under the current waiver, but who will benefit from service at their specific level of need. (This is funded through the targeted reinvestment of community services funding in the base budget.)

The Senate and House are coordinating on the development of NC’s two-year budget, set to roll out in the coming weeks.

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

Focus on Sensory Processing Strategies at Annual Conference

 

King-Thomas

The Autism Society of North Carolina held its annual conference March 24-25 in Charlotte. We will be sharing information from conference presentations in upcoming blog posts.

Linda King-Thomas, a co-founder of Developmental Therapy Associates in Durham, presented on “Sensory Processing Issues and Practical Strategies” on the second day of the conference. Sensory integration is the neurological process that organizes sensation from one’s own body and from the environment and makes it possible to use the body effectively within the environment.

In addition to the sensory systems with which we are all familiar (touch, hearing, sight, smell, and taste), we also have vestibular, which relates to movement and gravity, and proprioceptive, which is about “heavy work,” or input to our muscles and joints.

Everyone has differences in their sensory processing, Ms. King-Thomas said. About 5-10 percent of people have sensory processing issues, and it is much more common among boys. A lot of children with autism have a narrow band of sensory input that they can handle, she said; receiving too much input or too little can be a challenge.

Sensory processing disorder has three categories, and an individual can be diagnosed with more than one:

  • Sensory modulation disorder: difficulty regulating the intensity of response to sensory input
  • Sensory discrimination disorder: difficulty interpreting the temporal and spatial characteristics of sensory stimuli
  • Sensory-based motor disorder – dyspraxia: difficulty conceiving, planning, and executing a novel motor action

Sensory modulation disorder

Ms. King-Thomas then focused on sensory modulation disorder, describing three ways that individuals can react to sensory input: over-responsivity, under-responsivity, and sensory-seeking. To help parents understand which category their children might be displaying, Ms. King-Thomas provided some examples for each.

Sensory over-responsivity behaviors:

  • Covers ears with loud noises
  • Sensitive to bright lights
  • Fears movement or changes in position
  • Avoids touching certain textures (grass, sand, finger-paints, squishy)
  • Does not like to get messy
  • Has strong clothing preferences
  • Does not like to be touched unexpectedly (They are willing to touch others, but it must be their idea, so they know it is coming.)
  • Has a poor tolerance to grooming (We have lots of receptors on hands, feet, and where our hair is. If you are trying to get them accustomed to touch, start therapy elsewhere.)
  • Often irritable, aggressive, impulsive, and moody
  • Has a poor tolerance to transitions
  • Frequently cries and is hard to console
  • Does not like to be held or cuddled
  • Needs help to fall asleep and stay asleep
  • Exhibits extreme separation anxiety
  • Has difficulty with transitions to new foods

Sensory under-responsivity behaviors

  • Has delayed reaction time
  • Is slow to respond to name
  • Seems unaware of environment, wanders
  • Has a high pain tolerance
  • Does not sense when diaper is wet
  • Does not feel clothing twisted on body
  • Does not feel food on face or dirt on hands
  • Does not seem to notice when touched
  • Has flat affect much of the time
  • Is hard to engage, may observe but not participate
  • Is unaware of body sensations (temperature, hunger)
  • Does not seem to notice noxious odors
  • Appears slow, unmotivated, or withdrawn

Sensory-seeking behaviors

  • Has a high activity level, seldom sits still
  • Touches everything
  • Hangs on people
  • Smells or mouths everything
  • Takes excessive risks that compromise personal safety
  • Prefers foods with strong flavors
  • Seeks loud noise
  • Likes to watch bright or spinning objects
  • Is excessively affectionate
  • May be demanding or hard to calm
  • Is a risk taker
  • Intrudes on others
  • May be kicked out of child care or expelled from school

To make things even more complicated, Ms. King-Thomas said, one person can have all three of these because each sensory system may be under- or over-reactive, independent of the other sensory systems.

These issues can affect an individual’s play skills, self-care and feeding, school-related activities, and social participation. If we can understand how behavior is affected, we can help children by modifying their environment, she said. For example, a child who is averse to unexpected touch could be allowed always to line up at the end of the line in school so that no one bumps into him unexpectedly.

Sensory processing strategies

Individuals with sensory processing issues can be treated with therapy using a sensory integrative approach. But Ms. King Thomas said families also can work on these issues at home, focusing on the sensory diet.

Your sensory diet is your daily intake of sensory and motor experiences needed to adaptively interact with the environment. Sensory and motor experiences help maintain optimal arousal and attention for learning. Once an individual is assessed by professionals to determine how much input they need, a plan is made to provide it throughout the day. Intensity, frequency, duration, and rhythm of input are all figured into the formula.

The goal is to keep the individual in the band of optimal arousal, so that will determine whether an alerting or calming input is used. For example, light touch is alerting, and deep pressure is calming; more sensation is not always better. The individual should be closely monitored to see how they respond.

Ms. King-Thomas mentioned some activities and items that could be used or done at home.

  • Movement: unstable surfaces such as a therapy ball, calisthenics, jumping, swinging, bouncing, dancing
  • Heavy work: carrying heavy objects such as a weighted backpack, digging in a garden, working out with weights, pushing a grocery cart
  • Deep pressure touch: weighted vest or blanket (make your own with rice), massage, tight exercise clothing worn under clothes
  • Oral motor: sucking through a long straw or using a thicker liquid, blowing bubbles or on a whistle, chewing gum
  • Womb spaces: small, dark, quiet spaces such as a cupboard; closet with pillows; tent; claw bathtub with pillows
  • Tactile: cheap toys such as squishy balls, silly putty, and bendable figures; phone cord; kneading bread; sand play. (These all help to take the place of moving the entire body)

Ms. King-Thomas also had some strategies to share, depending on the input your child may need:

  • Note preferences in clothing, temperature, and bed linens
  • Use music, white-noise machines, and sound-canceling headphones
  • Adapt walls with either bright or muted colors
  • Use natural light and avoid fluorescent light

Ms. King-Thomas, MHS, OTR/L, C/NDT, has worked in a variety of pediatric and developmental disabilities settings and has presented numerous lectures on sensory integration, fine motor, and feeding, including speaking to the counselors at ASNC’s Camp Royall for over 20 years.

For more resources, see the sensory category in the ASNC Bookstore.