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.

State Budget Package Finalized; Autism Insurance Reform Set Aside

This article is the first of several wrapping up the 2014 legislative session. Look for more details on the budget and information on other legislation passed during the session in coming days. 

The NC House and Senate agreed on a budget package to adjust the final year of the current two-year budget and passed the conference committee report, i.e. the agreed-upon budget, the week of August 1. The budget includes funding for teacher raises, new crisis services, Medicaid budget shortfalls, and group home support, while cutting some education funding and reducing Medicaid payment rates for services. Existing autism services were retained, and new services are being planned for, but are not yet funded.

Medicaid reform and managed care changes were not agreed upon this session, though legislators likely will return in mid-November to continue work on a compromise. Autism insurance legislation was not passed by the Senate during this short session and was not included in the budget bill.

Despite finalizing the budget, the General Assembly House and Senate were not able to agree on the terms of the adjournment resolution, Senate Joint Resolution 881, which would officially wrap up the General Assembly’s work for the short session but still allow a return for special sessions between now and January, when the new legislative long session begins. The House wanted to return in August to settle differences on coal ash legislation and take up other regulatory bills including autism insurance and then handle Medicaid reform in November. The Senate would prefer to wait until November to handle unresolved issues on coal ash and Medicaid reform, and its version of the adjournment resolution, Senate Adjournment Version 3, makes no mention of autism insurance. Without an agreement on adjournment, the House and Senate have been holding “skeleton” sessions every four days in which a few members start the day’s session, but take up no new business or votes, and quickly close. Legislators were in session Aug. 13-15 to try to fix technical problems in the budget but again had difficulty agreeing on the terms of those fixes. An adjournment resolution to return in November may be agreed on soon, or the skeleton session may continue until then.

Insurance Reform

As mentioned above, the Senate did not take up either bill related to autism insurance reform that was passed by the House. Senate leadership stated publicly a few weeks ago that they did not intend to pass autism insurance reform this year. So, despite insurance reform being included in the House adjournment resolution, which would keep it alive the rest of the year, senators have said they intend to work only on Medicaid reform and coal ash issues, leaving everything else until next year.

Advocates, families, and professionals worked very hard to educate individual senators and Senate leaders about autism and the need for insurance reform. Progress has been made with the Senate on support for the issue, despite a bill not being passed. While the outcome is very disappointing, everyone who participated in our advocacy days, who called, wrote or visited their legislators can be very proud of the work that was accomplished this year. The House continued its strong show of support for the legislation into the final days of the session. Senators have expressed much support for the bill and an interest in seeing new legislation come forward next year. And the State Employees’ Health Plan has voluntarily adopted a new autism insurance benefit that will begin in January. The new benefit can serve as a model for reforming insurance in the state and removes the need for the General Assembly to appropriate funds in a new autism insurance bill next year.

ASNC will continue its work to pass autism insurance reform in North Carolina, building on the work that has already been done and moving forward with new legislation when the General Assembly convenes the long session in late January next year. Thank you again for your help in educating and advocating this year.

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.

Building Better Bridges with Parents and Caregivers

 

Golden Gate Bridge

This article was contributed by Louise Southern of ASNC’s Clinical and Training Department.

I have worked in the field of autism intervention for 16 years in a variety of clinical and educational contexts. My current role within the Autism Society of North Carolina is centered on delivering workshops to parents and professionals and providing individualized consultation to parents, caregivers, professionals, and self-advocates.

As I reflect upon my experiences and as I consider what I must continue to aim to do going forward, here are a few things that I “know”:

1) A growing body of research has yielded identification of certain evidence-based practices in the field of autism intervention. For my entire career, I will be working to know more, to become more precise and fluent in the application of and training on best practices.

2) Parent-mediated interventions and parent involvement are identified as an “evidence-based” practice within the field. Within some intervention models, the parents are positioned as the primary interventionist, and the results of such interventions are quite promising. In my experience, I believe that parents and caregivers must be empowered to take the lead role within the intervention team. Truly partnering with parents to produce relevant and significant intervention outcomes means hearing their voices within a fluid exchange (“we teach each other,” not “I teach you”), and it means that they understand and “own” the intervention because it reflects their values, priorities, activities, and family structure and interaction patterns. As professionals, we must be so careful not to allow our own position and agenda as “consultant” or “expert” to overshadow the parent’s voice and perspective.

Further (and certainly), we must not eclipse the voice and values of the individual with autism. We may come into a situation “knowing” our stuff, but we also must enter the relationship ready to listen and to learn from the families we serve. Our approach cannot be to impose priorities and information onto families. I cannot start with what I know, but rather, must start with the individual with autism and his/her family – what they know and share. We build a more authentic and equal partnership and thereby a more solid “bridge” (i.e., the home-based intervention program, the behavior support plan, the Individualized Education Program, etc.) when we start there. I know for certain that I will be refining my own “bridge-building” skills for my entire career.

As professionals, we identify goals and collect data that drives decision-making. Our goals are often framed in measurable and observable terms. While certainly important features of an intervention program, there are also other, less tangible objectives that we should also aim to achieve as we serve individuals with autism and their families. Here are but a few of those:

  • The strategies and activities that I recommended naturally fit with what my clients do in their home and community, and what they value as a family.
  • The challenging behaviors that we addressed were the behaviors of most concern to the family.
  • The skills we worked to strengthen were the skills that were most important to the individual with autism and his or her family.
  • The strategies that I recommended can be maintained by the family in the long term.
  • The activities and strategies that I presented built upon the individual’s strengths, more so than weaknesses.
  • I treated the parents or caregivers as equal partners in the intervention process.
  • The goals we identified reflected the goals of the individual with autism and his or her family.

Louise Southern M.Ed., BCBA, a member of ASNC’s Clinical and Training Department, can be reached at lsouthern@autismsociety-nc.org or 919-743-0204. ASNC’s Clinical and Training Department staff is composed of PhD and master’s-level licensed psychologists, Board Certified Behavior Analysts, and former special education teachers. We provide individualized intensive consultation using evidence-based practices to support children and adults across the spectrum in home, school, employment, residential, and other community-based contexts. We also deliver workshops to parents and professionals on a wide range of topics including but not limited to, strategies to prevent and respond to challenging behaviors, best practices in early intervention, functional communication training, and instructional strategies to support students with autism in special and general education contexts.

 

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