Disability Scoop: National Coalition Sets Roadmap To Improve Health Care For Those With IDD

by Michelle Diament | March 14, 2024

An alliance of self-advocates, doctor groups and other health care leaders has a plan to transform the experiences of people with developmental disabilities as they seek medical care.

More than a dozen organizations worked alongside individuals with developmental disabilities to develop the new National Roadmap for Disability-Inclusive Healthcare, a set of goals and actions that various stakeholders should take to better prepare doctors, nurses and dentists to treat those with disabilities.

The plan, released this week, outlines steps for educational associations, regulatory and accrediting bodies and professional organizations. For example, the roadmap recommends that professional societies incentivize continuing clinical education focused on intellectual and developmental disabilities and it says that regulatory bodies should require learning about intellectual and developmental disabilities as part of licensing renewals and board certifications.

Notably, many of the groups that are empowered to make changes in the field were part of the coalition that developed the new agenda. That includes the Accreditation Council for Graduate Medical Education, which sets standards for physician residency programs nationwide, as well as the Association of American Medical Colleges, the American Dental Education Association, the American College of Physicians and the American Academy of Pediatrics.

“The National Roadmap for Disability-Inclusive Healthcare is an ambitious blueprint that can measurably change health care,” said Dr. Hoangmai Pham, president and CEO of the Institute for Exceptional Care, a nonprofit focused on improving health care for people with intellectual and developmental disabilities that brought the coalition together.

Officials with the Institute for Exceptional Care say that members of the coalition have already started to use the roadmap to work with medical associations and dental practices on changes.

Most doctors receive little if any training on developmental disabilities while in medical school and residency. As a result, research shows that just 41% of physicians feel prepared to offer people with disabilities a similar qualify of care to others.

Disability advocates have been pushing in recent years to add mandated training on intellectual and developmental disabilities to the medical school curriculum, but such efforts have fallen flat so far.

Nonetheless, there have been some signs of progress, with officials from the American Medical Association and the American Dental Association agreeing in 2022 to work toward expanding disability training for medical and dental students.

Original story from Disability Scoop: https://www.disabilityscoop.com/2024/03/14/national-coalition-sets-roadmap-to-improve-health-care-for-those-with-idd/30784/

IEC’S Take On: Disability, health equity, and the NIH

Driving large-scale changes in healthcare to improve wellbeing for people with IDD is IEC’s mission.

Explaining IEC’s take on health policy and its implications for people with IDD is a big part of the job for Lauren Erickson, our Director of Policy and Programs.

Background: IEC has been getting a lot of questions about the actions taken by the National Institute on Minority Health and Health Disparities (NIMHD) Advisory Committee in September.

The committee initially made the controversial decision not to designate people with disabilities as a “health disparity population” — and then reversed this decision a few weeks later.

Here are Lauren’s thoughts on the NIH controversy.

Question: What was the committee’s original decision and why was this bad for people with IDD?

Lauren: The NIMHD Advisory Committee initially recommended not to designate people with disabilities as a health disparity population. This designation would create additional funding opportunities to support improving health of people with disabilities, and expand research funding to further study disparities in the disability community.

It is well known that people with IDD experience poorer access to care, poorer overall health, and higher rates of obesity, chronic illnesses, mental illness and suicide, preventable accidents, maternal mortality, and COVID death than the general population, so the decision really didn’t make sense.

Question: Were you surprised by the original decision, especially given the generally disability-friendly stance of the Biden administration?

Lauren: IEC was very surprised by the original decision; the Biden Administration has taken enormous strides to support the disability community.

Most recently, not even a week before the original NIMHD decision was announced, HHS released regulations updating the Rehabilitation Act reinstating non-discrimination requirements for healthcare facilities to support people with disabilities and the NIH proposed updating its mission statement to be less ableist.

The original decision by the NIMHD committee was incredibly out of step with these other actions.

Question: You and other IEC staff listen closely to disability self-advocates – it’s fundamental to IEC’s work. What are you are hearing now that the decision has been reversed and what do they, and IEC want to see happen next?  

Lauren: We heard a lot of pushback and frustration. IEC received a lot of questions from our self-advocate partners and other disability organizations and we worked with them to communicate with administration officials about the negative impact of the initial decision.

We were thrilled when the NIMHD committee reversed their decision a few weeks ago and designated people with disabilities as a health disparity population.

Going forward, we hope to see continued attention to improving the quality of data on people with disabilities, especially data to identify them in claims data and EMRs. This is a problem that IEC believes is entirely solvable, and we’re trying to address it with our Making IDD Visible initiative.

Payment reform: Critical to IEC’s mission

Primary care is foundational to a high-performing health care system and improving health equity. It is also a cornerstone of IEC’s work to make healthcare better and safer for people with disabilities.

Policymakers have begun to recognize the need to increase investment in primary care and provider participation in value-based payment models.

Mai Pham joins a distinguished panel hosted by the Bipartisan Policy Center and including Adam Myers, MD, Chief Clinical Transformation Officer, Blue Cross Blue Shield Association, and Robert Phillips, MD, MSPH, Executive Director, The Center for Professionalism and Value in Health Care, American Board of Family Medicine. Topics include federal policy opportunities for strengthening value-based primary care, as well as innovative payment and delivery models that are working.

 Learn more here.

IEC Board Member Interviewed on PBS Newshour

In a recent commentary for STAT, IEC Board member Dena Gassner and co-author John Robison explored recent CDC reports that autism diagnosis among children has risen to 1 in every 36 (up from 1 in 11  in 2006).

The authors state that “The main reason we are finding more autism is simple: Clinicians are getting better at spotting what was always there,” adding that “In the new reports, the balance has shifted, with increasing identification among people of color. We see that as an improvement, but we’ve still got a way to go, particularly when it comes to diagnosing autism in girls and women, in people with less visible symptoms, and others.” (Read the STAT commentary here)

In her PBS Newshour interview, Gassner adds, “This is a relief. It represents the idea that some of these children who were lost in these systems may actually be finding their way home.”  Watch the PBS interview here.

IEC Welcomes New Board Member Dena Gassner, MSW; Ph.D. Candidate

Dena Gassner joins the IEC Board of Directors, bringing high levels of professional expertise grown from a lifetime of systems navigation on behalf of her son who is autistic. In her role as an autistic scholar, she is engaged in research as an appointed member of the Review Board for the Autism Intervention Research Network in Physical Health and is a member of the AIR-P Gender, Sexuality, and Healthcare Node with UCLA. She is in her third PCORI project with Drs. Teal Benevides and Brenna Maddox comparing mindfulness and adapted CBT for suicide prevention. She is an appointed member of the Interagency Autism Coordinating Committee (IACC). Gassner is an Adjunct Professor at Towson University and in 1999, she was awarded the Cathy Pratt Professional of the Year Award from Autism Society of America. She seeks to live a life of service and authentic autistic transparency.  

IEC is proud that individuals with intellectual and developmental disabilities (IDD) make up one-quarter of our Board, bringing invaluable lived experience and insight to our governance and every aspect of our work. Read Dena Gassner’s full bio here.

IEC submits comments on disability and nursing education standards to CCNE

IEC submitted this comment letter to the Commission on Collegiate Nursing Education (CCNE) on incorporating disability education into the Standards for Accreditation of Baccalaureate and Graduate Nursing Programs. The letter is co-authored by IEC CEO Mai Pham, MD, MPH, and Allison P. Edwards, DrPH, MS, RN, CNE, Assistant Professor, UTHealth Cizik School of Nursing who has published research on the existing knowledge gap of nursing students in the care of people with disabilities (PWD). The CCNE is recognized as a national, autonomous accreditation agency, responsible for the quality and integrity of nursing education.

Read it here.

Compassion in the Emergency Room: Neil’s Story

By Maura Sullivan

My son Neil is 21 and has profound autism. He is non-speaking but often communicates through his behavior.

This story happened when Neil was about 14.

He was in terrible distress, crying, clearly in pain, trying to hurt himself, and lashing out at everyone in our family. With Neil’s medical history, we knew it was important to bring him to the emergency room.

At the hospital, the wait was long. Neil continued to scream and lash out at his dad and me.

Another patient in the waiting room stood up, pointed his finger at me.

Then he said, “You oughta have to put a muzzle on that thing.”

I felt every bit of strength drain out of me. I thought, how will I get Neil through this today.

I was also thinking, how will I get Neil through life.

Changing the culture in an instant

The next thing that happened turned my fears around.

A doctor approached the patient who made the remark and escorted him to a different waiting area.

Then he came over to Neil and asked him, “What is your name?” I told the doctor that his name was Neil.

The doctor leaned down, held Neil‘s elbows, and said, “I am so sorry that you are hurting and I’m so sorry that you have to wait. But I am going to help you and I’m going to help your mom and dad, because you deserve it.”

Then the doctor gazed around the room. People were listening.

One mom asked me if Neil wanted to borrow her kid’s toy.

Another person said the man who had made the comment was a bully.

The nurses and other staff asked how they could make Neil more comfortable.

Neil’s behaviors calmed.

The power of modeling compassionate care

The power that a doctor has to shift attitudes and barriers is immense.

I’m so grateful for that doctor, who changed the culture in that waiting room from intolerant to compassionate in just a couple minutes. He was Neil’s champion.

I felt stronger than ever, and ready to advocate for my son.

Now I raise the bar for all healthcare professionals! I hope that more doctors will choose to be models, stepping up for vulnerable and marginalized people.

Maura Sullivan is a Parent Advocate who lives and works in Massachusetts. Her autistic son Neil is now 21 years old.

Proceedings of the NASEM workshop on IDD care published

IEC Board member James Perrin and CEO Mai Pham co-chaired the planning committee for a workshop hosted by the National Academies of Sciences, Engineering, and Medicine, titled Optimizing Care Systems for People with Intellectual and Developmental Disabilities. The workshop happened over three days in December 2021 (learn more and view all the panel videos here.)

Now the proceedings document of that workshop is available: read it here.

IEC submits comments to PCORI on data infrastructure enhancements (Copy)

In this policy letter, IEC applauds PCORI’s desire to improve data systems and reiterates our strong belief in the need for tools to more comprehensively identify people with intellectual and developmental disabilities (IDD) in a manner that supports real-time clinical decision-making. IEC also encourages PCORI to invest in the development of data infrastructure and tools to more comprehensively identify people with IDD using novel combinations of clinical and non-clinical data.

Read it here.

IEC submits comment letter supporting CMS efforts to stop discrimination in healthcare

The letter provides detailed examples and reasons to support the Centers for Medicare & Medicaid Services’ (CMS) Proposed rule RIN Number 0945-AA17 aimed at improving the health care system and stopping discrimination in the health-care system.

Read the letter here.

IEC submits comment letter on Medicare proposed dental coverage (rule CMS-1770-P)

For a host of reasons detailed in the letter, IEC applauds the CMS for a proposal that directly addresses dental services of Medicare beneficiaries. Expanded Medicare coverage of critical dental care would improve dental health, overall health, and quality of life of individuals with IDD.

Read IEC’s submission here.

IEC Contributes to new HELEN Journal

Mai Pham contributed thoughts on the need for an accurate count of people with IDD to help build demand and support for more inclusive healthcare, and a small feature on IEC was also included, in the inaugural issue of the new AADMD journal Helen: The Journal of Human Exceptionality (helenjournal.org). Helen is “where people with disabilities, families, clinicians, and caregivers intersect for inclusive health.” Mai has also joined Helen’s editorial board.

Read it here (IEC material starts on page 22)

“An Advocate, Always” - BJ Stasio

Disability advocate BJ Stasio is literally in the Hall of Fame.

He’s 51, has lived with cerebral palsy from birth, and resides in Buffalo, NY with his wife. BJ has been employed by the New York State Office for People With Developmental Disabilities (OPWDD) for more than 20 years and is past president of the Board of Directors of the Self-Advocacy Association of New York State (SANYS).  

In addition, he and co-creator Max Donatelli are piloting a training curriculum called The Art of Advocacy.  

With IEC, BJ is serving on the Steering Group for ABC3 and is a key informant for the IIDDEAL project.  

Recently BJ spoke with IEC about advocacy, his unique relationship with his Direct Service Professional (DSP) Debbie, and what needs to change in healthcare. This interview has been edited and condensed with BJ’s permission. 

BJ Stasio (right) greets New York Governor Kathy Hochul (right) as his friend and advocacy partner Max Donatelli (center) looks on (March 28, 2022)

IEC: How do you describe yourself?  

BJ Stasio: I'm an advocate, always. I am known in the state as someone who will put up a fight. Who has the governor of New York State on speed dial? Not too many people.

IEC: What do you wish more doctors understood? 

BJ Stasio: That people with disabilities are human beings first, and billable patients later.  

Nobody with a disability is the same. We all have our unique qualities which make us productive human beings, to whatever our capabilities are. My disability does not define me; it enhances my human-ness. 

The general statement I like to make when I meet a new doctor – and it throws them off – is, don't judge a book by its cover. Because you'll be surprised by the story inside that book.  

IEC: Can general physicians and other providers learn to do a better job caring for people with disabilities, in your opinion?  

BJ Stasio: We, as a society of human beings, are constantly learning till the day we die. So anybody can learn anything. It's just, you have to open your mind and be willing to learn and not be stuck in what you think is right.  

It's gonna take an effort from everybody involved in this process, you know, and that's why I love, love this group [IEC], because I feel the effort, I feel the energy. And that's why I'm so engaged. Because if, if you show me effort, I'm going to give you all I got. And all I got is a lot. 

IEC: What would success look like?  

BJ Stasio: More listening, better communication, better understanding of what it's like to live with a disability. Because unless you roll a mile in my wheels, you have no understanding what it's like.  

But I think the in the entire insurance system needs to be accepting of those with disabilities that like, oh my God, some of us actually have a job and are participating members of society. Oh, my goodness, what a shocker. You know, not everybody's on Medicaid and Medicare.

IEC: What are some of the right questions for providers to ask?  

BJ Stasio: Well, how are you doing? What's going on? Not always what I didn't do [like following care recommendations]. It always starts out with the negative – what I didn't do, because I'm not the greatest patient. I'm not.

IEC: Where do you think the best opportunities for progress are?

BJ Stasio: Say you have a partner, like a DSP (Direct Service Professional). And the medical professionals actually asked the Direct Support Professional and the person who receives services to talk about what the relationship is like and the expectations when you go to a medical visit.

That would be the ideal thing, because you learn best by listening to someone with lived experience.

Because my DSP, Debbie Dolinski, she is a saint. She is not only my staff, she's my family, and I love her to death. I tell her that every day. Without her I wouldn't be able to do the advocacy that I do.

 IEC: Have you seen progress in your lifetime?

 BJ Stasio: In some areas, yes, because to be welcomed and to be accepted in a medical practice for who you are, not what you appear to be, is a step in the right direction.

But there is more that needs to be done. Because as we get older, those of us with disabilities, we're going to need more specialized care. And those who provide the specialized care need to understand the uniqueness of all human beings with disabilities. Because you could have a hidden disability.

Change is scary. But change can also be good and beneficial because it's not just about now. And the more we make changes now, the better the future will be.

The Art of Advocacy is my legacy. It’s what God has called me to do. And it will be it will be the thing I do to my dying breath. (Or in the nursing home throwing my diaper.)

IEC’s ABC3 Featured in AAMC News

This article from the newsletter of the Association of American Medical Colleges, Caring for adults with intellectual and developmental disabilities, discusses the unique challenges that children with autism, Down syndrome, and similar disabilities face in navigating the health care system, and notes that medical schools are just beginning to train physicians in how to treat them. It also cites IEC’s Action to Build Clinical Confidence & Culture (ABC3) initiative, which is working with the AAMC and other accrediting and educational bodies to better prepare clinicians.

Read the whole story at AAMC News.

Community Webinar: Vòng Tay Cha Mẹ Việt

Empowering our disability community to share their lived experience and knowledge with physicians and other providers to secure the best possible care for disabled loved ones is a core IEC priority. CEO Mai Pham was honored to be invited to discuss IEC’s work with a Vietnamese families group, Vòng Tay Cha Mẹ Việt, and to model the power of a Vietnamese-American doctor leading change.

Watch the entire webinar recording here (on Facebook), and check out the Powerpoint presentation with Vietnamese translation that Mai gave (download PPT here).

As Mai reflected after the event, “Vietnamese are culturally deferential to authority figures like doctors. It’s deeply engrained. So the most emotional point of the evening for me was when a mother asked if it is okay to question your kid’s doctor, and my telling them that as parents, they are the best experts in their children’s needs and how to support their children.”

Comments in Response to New York’s Proposed 1115 Waiver Amendments

Download these comments (PDF)

Submitted via e-mail 1115waivers@health.ny.gov

Amir Bassiri
NYS Medicaid Director
New York State Department of Health
Office of Health Insurance Programs
Waiver Management Unit
99 Washington Avenue
12th floor (Suite 1208)
Albany, NY 12210

Re: Comments in Response to New York’s Proposed 1115 Waiver Amendments (PDF)

Dear Mr. Bassiri,

We are submitting comments in response to the state’s Proposed 1115 Waiver Amendments to express our strong recommendation that multiple elements of the waiver more deliberately address intellectual and/or developmental disabilities (IDD). While the proposed amendments are focused on Medicaid managed care, we believe there is significant opportunity to define the work of HEROs, SDHNs, and the design of value-based payment structures in ways that would acknowledge the meaningful number of beneficiaries with “hidden” IDD and/or who do not qualify for HCBS waiver services and who are being served in managed care organizations.

Institute for Exceptional Care (IEC) is a non-profit organization committed to transforming healthcare for people with IDD. IEC is working with broad coalitions of clinical organizations, payers, purchasers, regulators, consumer advocates, and social service professionals to improve systems and processes of care that support better health and life outcomes. In the Seamless Care Alliance of Nassau & Suffolk on Long Island, IEC and our partners aim to reduce avoidable emergency department (ED) visits, improve ED care, and ease transitions back to the community. SCANS seeks to strengthen care coordination between health systems, home- and community-based service providers, state and county agencies, insurers, and people with IDD and their families and caregivers. IEC is also collaborating with Montefiore Medical Center and Long Island Select Healthcare on a project to automate the comprehensive identification of people with IDD in clinical and claims data that could help address disparities and build a business care for better care.

Introduction Section of 1115 Waiver

IEC appreciates New York’s focus on equity and its broad definition of sources of disparities that includes disability.

There is substantial research documenting poor outcomes for individuals with IDD, including increased risk for both COVID infection and COVID death, maternal mortality, obesity, diabetes, mental illness, and suicide. The intersection of IDD with race/ethnicity and poverty leads to even worse outcomes.

Many Medicaid beneficiaries with IDD do not receive HCBS waiver-provided services. According to national data, in 2015, 67 percent of people on the HCBS waiver waiting lists had IDD.

Regardless of whether they are in fee-for-service (FFS) or MCOs, everyone with IDD would benefit from providers taking more deliberate approach to (1) flexible communication and service modalities; (2) engaging Home and Community Based Services (HCBS); and (3) taking the burden of coordination off of patients and families. New York should ensure that HEROs, SDHNs, and MCOs focus explicitly on IDD.

HEROs

IEC supports the state’s proposed creation of Health Equity Regional Organizations (HEROs). HEROs bring MCOs, providers, QEs, SDHNs/CBOs, and other stakeholders together in a collaborative governance structure, but it is crucial that people with IDD are in leadership roles. These lived experiences would ensure that HEROs take into account the needs of the IDD population.

MCOs

IDD is poorly documented in clinical charts and insurance claims, likely due to a combination of under-recognition by clinicians, the lack of payment rationales for coding, and patients not self-disclosing, among other reasons. Our analysis of claims from a national insurer suggested a prevalence rate only 10-25% of what would be expected based on surveillance data from the Centers for Disease Control and Prevention or from survey data. A separate analysis of national electronic medical record data showed a drop of over 50% in the ostensible prevalence of IDD between late adolescence and young adulthood, suggesting poor fidelity of diagnostic documentation during the transition from pediatric to adult care. We would thus strongly suspect that Medicaid MCOs in New York serve a significant number of people with IDD.

“Hidden” IDD can explain avoidable clinical complications and spending in Medicaid. Lack of awareness of a person’s underlying IDD condition may lead to “diagnostic overshadowing,” inadequate communication or other forms of support that could improve health literacy and behaviors, and missed opportunities for targeting specific clinical and non-clinical interventions.

We agree with previous public comments that this waiver proposal should include resources to more reliably identify beneficiaries with IDD.

Social Determinant of Health Networks

IEC also recommends that the waiver proposal broaden the categories of qualifying services from SDHNs to include HCBS services, which are of potentially high-value to beneficiaries with hidden IDD who have not applied for the HCBS waiver, or are languishing on the wait list. Beneficiaries without IDD may also benefit from HCBS support.

IEC also encourages the State to set clear expectations that SDHNs should allocate a meaningful proportion of their funding toward investments in staffing and infrastructure for the community based organizations within their networks, which have struggled with chronic underfunding and further depletion of staff during the pandemic. Without such investments on the ground, SDHNs will be challenged to partner with CBOs in sustainable ways.

This proposed waiver amendment shares many elements with those being implemented in North Carolina's waiver. But we note a key difference between the two states – North Carolina has mandatory assignment for beneficiaries with IDD, significant behavioral health disorders, or traumatic brain injury, into tailored managed care plans, regardless of their status regarding HCBS waiver services. With the exception of Partners Health Plan, which has extremely modest enrollment, New York does not currently offer the same comprehensive “wrap around” within a managed care context. This waiver proposal presents an opportunity to more deliberately design programs and payment structures for beneficiaries with IDD who are served by general Medicaid MCOs.

In conclusion, IEC applauds the State for a proposal that directly addresses social determinants of health and equity, and that offers regional leaders the flexibility to define priorities and craft solutions most meaningful for their communities. But to do so without deliberate and comprehensive attention to IDD risks once again excluding this most vulnerable population from participating in health system changes that could have deep impact on their lives, thereby reinforcing some of the very inequities the State purports to solve. 

Sincerely,

Institute for Exceptional Care
Hoangmai Pham
President & CEO

IEC Board Member Julia Bascom Profiled for Autism Advocacy

“Autistic People Have Been Excluded from Advocacy Conversations. Julia Bascom Is Changing That” profiles IEC Board Member Julia Bascom for her pivotal work in the modern neurodiversity movement over the last decade in The 19th News.

Bascom is the executive director of the Autistic Self Advocacy Network (ASAN), the largest nonprofit in the United States operated entirely by and for autistic people. Read the story here.

In My Own Words: Kayte Barton

I think if we can fix the finance and reimbursement system first, and then focus on creating a way to mandate education programs in med schools, we will create physicians who are willing to help create programs and educate people with intellectual disabilities.

What I Learned at the NASEM Workshop – and What Needs to Change

My name is Kayte Barton. I am high functioning autistic, and a self-advocate. I am a member of IEC’s Advisory Council. I had the opportunity to attend the National Academy of Sciences, Engineering, and Medicine’s virtual conference on exploring an integrated care system for people with intellectual and developmental disabilities in December.

I learned some things that I had not been aware of, and learned of things that I want to get involved with, to help make these changes.

The first thing is the Medicaid and Medicare reimbursement system. I had been aware of it in the dental world, but was not aware that it was an issue in the medical field. This needs to change. Maybe if it were a better system, physicians would be interested in learning more about how to work with people with intellectual disabilities, and would create specialties aimed at us. Legislation needs to address this, to ensure that we will receive access to good quality medical care and caring physicians that understand us.

The second thing I learned is that a lot of people aren’t aware how many people there are in the U.S. with intellectual and developmental disabilities (I/DD). People with intellectual disabilities are under-identified in the medical community. This under-counting can miss 20% of the people who seek out medical care.

This also doesn’t address the invisible disabilities such as high functioning autism or other related disabilities. People often appear normal on the outside, but their minds don’t work normally. There needs to be a better system to identify an intellectual disability in an electronic health record, so it’s not hidden deep in my chart. It should be on the vitals page, (with weight, blood pressure, etc.)

The third thing I learned is the importance of either hiring a person with an intellectual disability or using a self-advocate to help guide the health care system or insurance plan program to improve access to health care, and to help educate and train employees on how to work with intellectual disabilities. We can help create programs that would help provide a better and more Inclusive health care system.

Finding Someone to Work With Me

As a person with an intellectual disability, and someone who struggles with obesity, it’s great to hear that I am on the right track with my plan for obesity care for people with intellectual disabilities. I wish my physicians would have taken the time to help me. We need to tell physicians that it’s ok to tell their patients that they need to lose weight, and help them find a plan that would work for them.

I luckily found someone who understands and is willing to work with me. But I think if we can fix the finance and reimbursement system first, and then focus on creating a way to mandate education programs in med schools, we will create physicians who are willing to help create programs and educate people with intellectual disabilities about nutrition and wellness to prevent obesity. We also need to get Congress involved, to understand that we need a health care system that works for us.

NPR broadcasts profile of IEC

This radio and print piece explores the challenges that families of autistic children face in getting good diagnosis and the correct care, without adequate guidance or support. Correspondent Noam Levey interviews our CEO Mai Pham and her autistic son, Alexander Roodman, and cites the the work of IEC to explain the problem and explore solutions.

Mai Pham publishes first-person reflection in Exceptional Parent magazine

“When My Son Was In Crisis …. Why My Medical, Government, and Insurance Background Didn’t Help” tells the story of Mai’s family’s struggles to find the right care for their autistic son and why it motivated her to found IEC. Part of Exceptional Parent magazine’s 2022 Navigating Special Needs Resource Guide.

Read the story here.