When a son is diagnosed with Duchenne muscular dystrophy, the genetic counseling that follows almost always turns to his mother. She may learn that she carries the mutation, and the conversation usually reassures her in the same breath: carriers don't get muscular dystrophy. That much is accurate, and her muscles will work normally her whole life. What often goes unsaid is that her heart may not. Between 30 and 50 percent of women who carry a DMD mutation develop some degree of cardiomyopathy, a weakening of the heart muscle, often long before they'd think to look for it. The muscle disease skips them. The cardiac risk does not. Understanding why comes down to a single gene and the way the body decides which copy of it to use. Why a Carrier's Heart Is at Risk. The dystrophin gene sits on the X chromosome. Boys have one X, so a single broken copy leaves them with no working dystrophin, and Duchenne follows. Women have two X chromosomes, and a carrier has one healthy copy and one mutated copy. On paper, the healthy copy should cover for the broken one everywhere in the body. The complication is a process called X-inactivation. Early in development, every cell in a female body permanently switches off one of its two X chromosomes, chosen at random. Some cells silence the mutated copy and run on the healthy one. Others silence the healthy copy and are left producing faulty dystrophin, the same as a boy with the...

Carriers of the DMD gene can develop cardiomyopathy without any muscle symptoms. Here's the risk, the biology, and the screening you need.

Cardiac Risks for Female Carriers of Duchenne Muscular Dystrophy

The offer comes in, the pay is good, and the first thing that runs through your head is not excitement. It's the fear that taking the job will cost you the SSDI check you've built your budget around. That fear keeps a lot of people out of work they could do and want to do, and it's built on a real misunderstanding of how Social Security treats a return to work. Social Security wrote a rule for exactly this moment. It's called the Trial Work Period, and it exists so you can find out whether a job is going to work for your body and your life before a single dollar of your benefit is at risk. What the Trial Work Period Does. For nine months, you can earn any amount and still receive your full SSDI payment. Not a reduced check. Not a check with a clawback attached. The whole thing, every month, on top of whatever your job pays. There is no earnings ceiling during these nine months, so a month where you make $600 and a month where you make $6,000 are treated the same way as far as your benefit goes. Those nine months don't have to run back to back. Social Security counts them inside a rolling 60-month window, so you might use three of them this year, take a break when your health flares, and pick up the rest a year later. The clock only measures the most recent five years. A month counts...

The Trial Work Period lets you work nine months and keep your full SSDI check, no matter what you earn.

How Trial Work Period Lets You Test Employment Without Losing SSDI

Someone asks how you feel about the thing that just happened, and you go looking for the answer the way you'd search for a word in a language you only half know. Something is there. It carries weight and sits somewhere behind your ribs, refusing to hand over its name. The pause stretches past the point where a pause is comfortable, so you say "fine," because "fine" is a word that ends conversations. That gap between having an emotion and being able to name it carries a clinical term: alexithymia. Peter Sifneos coined it in 1973 from Greek roots meaning, roughly, no words for feelings. Alexithymia isn't a diagnosis but a trait measured along a spectrum, and it appears in autistic people, including those who identify with an Asperger syndrome diagnosis, at rates far above what the general population shows. What Alexithymia Is, and What It Isn't. Three difficulties tend to travel together. Identifying your own feelings. Describing those feelings to another person. And a thinking style that orients toward external events rather than internal states, so that a whole week gets recounted through what happened, who said what, and what got finished, with no reference to what any of it was like from the inside. Alexithymia is not an absence of emotion, and the research is unambiguous on that point. People who score high on alexithymia measures show the same physiological responses to emotional situations as anyone else: heart rate climbs, skin conductance rises, the body does what bodies...

Alexithymia makes emotions hard to name, not absent. What it means for Asperger syndrome, therapy, and everyday self-awareness.

Alexithymia and Asperger Syndrome: Difficulty Identifying Emotions

Around 4,300 Kansans with intellectual and developmental disabilities are waiting for a Medicaid waiver slot, and the typical wait runs close to nine years. On July 9, Governor Laura Kelly announced that the Centers for Medicare and Medicaid Services had approved a second waiver designed to shorten that line. It opens with 500 slots on October 1. The Community Supports Waiver is a new 1915(c) home and community based services waiver, approved by CMS on July 1 alongside an amendment to the state's KanCare managed care waiver. Both take effect October 1, 2026. CMS signed off on a projected enrollment of 500 people for the first waiver year, which runs through September 30, 2027. What the New Waiver Pays For. The Community Supports Waiver is built for Kansans who need help but do not need round-the-clock support. Services carry an annual cap of $20,000 per participant, and the waiver does not cover day services or residential services. Those remain on the comprehensive I/DD Waiver, the program that 9,399 Kansans currently use and that everyone on the waiting list is waiting for. A $20,000 ceiling funds a meaningful package of in-home supports for a person whose needs are steady and moderate. It does not fund a residential placement, and it will not stretch to cover a situation that changes for the worse. Eligibility follows the state's existing I/DD rules. An applicant must be at least five years old, have an intellectual disability that began before age 18 or a developmental disability...

Kansas has CMS approval for a new I/DD waiver. Taking one of its 500 slots means giving up your place on the comprehensive waitlist.

Kansas Won Federal Approval for 500 Disability Waiver Slots That Open October 1

If your family's home care, respite hours, or day supports arrive through Medicaid, there is a piece of paper somewhere in your state capital with an expiration date on it. Most families never see it. On July 7, CMS made that paper harder to renew. In an informational bulletin, CMS rescinded the 2015 guidance that let states use a "fast track" review when they wanted to extend an existing Section 1115 demonstration without changing much about it. Under the old path, a state submitting a straightforward extension could expect a federal answer in a little over three months. With that guidance withdrawn, every 1115 extension now goes through the standard review process, which takes longer and looks harder at the details. Why CMS Made the Change. The 2025 reconciliation law, Public Law 119-21, added budget neutrality as a statutory requirement for Section 1115 demonstrations. Starting January 1, 2027, CMS cannot approve, renew, or amend a demonstration unless the agency's Chief Actuary certifies that the project costs the federal government no more than it would have spent without it. That certification applies to every state, the District of Columbia, and the territories. CMS said the expedited path could not coexist with that requirement. A three-month review does not leave room for an actuarial certification of a program that may cover a million people. So the agency withdrew the 2015 guidance and its application templates, and told states to plan for full reviews and longer timelines. Who This Touches. Here is the...

CMS rescinded expedited review for 1115 waiver renewals. Here is who it touches and how families can weigh in.

CMS Ended the Fast-Track Renewal Path for the Section 1115 Waivers That Fund Home Care in Seven States

The flyer comes home in a backpack, usually crumpled. A golden retriever named something like Biscuit will be visiting on Thursdays, and there is a box to check if you consent. Most parents check the box, because who says no to a dog. Parents of a child with an IEP tend to read it twice, because they have learned that anything happening to their child during the school day is worth understanding before it starts, not after. So here is what is behind that flyer. A Therapy Dog Is a Guest, Not a Service Animal. A therapy dog belongs to a volunteer handler. The two of them are evaluated and registered as a team through an organization such as Pet Partners, Alliance of Therapy Dogs, or Therapy Dogs International. The dog has to be calm around wheelchairs, shouting, dropped lunch trays, and hands that grab rather than pet. Registration typically requires the dog to be at least a year old and living with the handler for months before the team is even evaluated. What a therapy dog does not have is public access rights. A service dog is individually trained to perform tasks for one person with a disability, and the Americans with Disabilities Act protects that dog's presence almost anywhere its handler goes. A therapy dog goes where it is invited. The school can end the program on a Tuesday and nobody has violated anyone's rights. That distinction matters when a parent asks whether their child can have the...

What a school therapy dog is, what it can do for your child, and the questions to ask before the first visit.

Therapy Dogs in Schools: How Canine Programs Support Students with Special Needs

The accommodation was approved two years ago. Your manager said yes in an email thread, the arrangement worked, your reviews were strong, and nobody raised it again. Then a new vice president announces a four-day in-office policy, HR pulls your file and finds nothing about remote work, and the manager who approved it left the company last spring. Remote-work accommodations tend to come apart here rather than at the request stage. The employee won the argument and never got a record of winning it. Rebuilding that record after a policy change is harder than building it during a quiet year, and the difference between those two positions is mostly paperwork. An Approved Arrangement Is Not Always an Accommodation. There are two ways an employer can let you work from home, and they carry completely different obligations. The first is managerial discretion. A supervisor decided your setup was fine and never routed it anywhere, so nothing in that arrangement binds the company, and the next supervisor can reverse it on a Monday without violating anything. The second is a reasonable accommodation under the ADA. You disclosed a disability, described a functional limitation, requested remote work as the fix, and the employer engaged in the interactive process and granted it. That arrangement attaches to the employer rather than the person who signed off on it, and changing it means going back through the process that created it. Many long-term remote workers with disabilities are in the first category and believe they are...

Turning a granted remote-work accommodation into a documented, durable one, and what to do if a return-to-office policy revokes it.

Remote Work as a Permanent Accommodation: Negotiating Long-Term Telework After Disability

Most parents clean before the first early intervention visit. The toys go back in the bin, the high chair gets wiped down, someone runs the vacuum over the living room rug. Then the therapist arrives, sits down on the floor, and asks whether she can watch lunch. Nothing about that first hour matches what therapy is supposed to look like. There is no clinic room, no table of exercises, no closed door with your child behind it. There is your kitchen, your toddler throwing a spoon, and a professional taking notes while you handle it. Home visits are not a scheduling convenience. Where your child's services happen is written into federal law, and the reasoning behind that law should change how you use every hour a therapist spends in your house. What Federal Law Requires About Where Services Happen. Part C of IDEA is the federal early intervention program for children from birth to age three. It requires that services be provided in natural environments to the maximum extent appropriate for each child. The definition is not left to interpretation. Federal regulation at 34 CFR 303.26 describes natural environments as settings that are natural or typical for a same-aged infant or toddler without a disability, which includes the home and community settings. The requirement carries a paper trail. If any of your child's services will happen somewhere other than a natural environment, the IFSP must include a written statement justifying that decision. Your service coordinator cannot move speech therapy to...

Federal law puts early intervention in your kitchen for a reason. What natural environments mean and how to use home visits.

Natural Learning Environments in Early Intervention: Why Your Child's Therapy Happens at Home

When an investment firm buys the company that runs your adult son's group home, nothing on the building changes. Same address, same front door, often the same staff for a while. The purchase agreement is private, the new owner's plans are private, and in most states no one is required to tell the family anything at all. Illinois is close to changing that for its own residents. A bill passed by the General Assembly this spring and sent to Gov. JB Pritzker in late June would require providers serving people with intellectual and developmental disabilities to notify the state when an asset management company buys them. What the Bill Requires. The measures originated as SB3118 and HB4728, introduced in January by Sen. Javier Cervantes and Rep. Laura Faver Dias of Grayslake, and they passed both chambers with bipartisan support. Under the legislation, a licensed IDD provider that is acquired by an asset management company, meaning a private equity fund, hedge fund, or venture capital firm, has to report the transaction to the state. The new owner then reports financial activity and staffing levels on an ongoing basis, and must give the state notice before selling the operation to someone else. Providers that skip those filings face fines. The enforcement mechanism reaches past the licensing system. A violation is treated as an unlawful practice under the Illinois Consumer Fraud and Deceptive Business Practices Act, which brings the attorney general into a system that has historically been policed only by licensing inspectors....

An Illinois bill awaiting Pritzker's signature would force investment firms to report when they buy IDD group homes and how they staff them.

Illinois Lawmakers Sent the Governor a Bill Requiring Private Equity to Disclose Disability Group Home Purchases

If your child gets occupational therapy through the Oregon Health Plan, or your family relies on a prosthetic limb, a wheelchair seating evaluation, or an ABA program, those services now appear by name on a state document about where Oregon might spend less money. Nothing has been cut. No bill has passed. What happened is that a panel Gov. Tina Kotek convened to find savings finished its work and handed her a list, and the services disability families depend on are on it. What the Advisory Group Delivered. Oregon faces an estimated $421 million general fund gap in its 2027-29 Medicaid budget, according to reporting by OPB published July 8 and updated July 9. The gap traces to H.R.1, the federal law that made the deepest reductions to Medicaid since the program began. Oregon also projects roughly $2.5 billion in lost federal matching funds as enrollment drops under new work requirements and more frequent eligibility checks. Kotek asked an 18-member advisory group to find a way through with the least harm. The group met privately every two weeks for six months. It did not reach consensus, and it did not rank anything. Instead it produced more than 40 separate options for reducing spending and left the choosing to the governor and the legislature. "Ultimately, the governor and the legislature are going to have very difficult choices to make," former Oregon Health Authority director Bruce Goldberg told OPB. Kotek's own assessment was shorter: "We shouldn't be in this situation." Her budget...

Oregon's Medicaid advisory group named PT, OT, prosthetics, and ABA oversight among 40+ cost-cutting options. The budget lands in December.

Oregon Is Weighing Cuts to Physical Therapy, Prosthetics, and Autism Care for Medicaid Members

The moment your chair stops being yours is at the end of the jet bridge. Someone loops a tag around the frame, and it goes down a lift into a cargo hold built for suitcases, handled by a crew that moved forty bags before it got to yours. Then you sit in 14C for four hours with no way to know what is happening under the floor. When the plane lands, the chair either comes back the way you handed it over, or it doesn't. In 2025, airlines carried 907,259 wheelchairs and scooters and mishandled roughly 9,900 of them, about 27 a day, according to the Department of Transportation's February 2026 Air Travel Consumer Report. The rate has been falling for several years running, from 1.26 percent in 2024 to 1.09 percent last year. Those averages describe an industry, not the afternoon your chair comes up the lift with a bent frame and a footplate hanging off it. The Rule Written to Protect You Is on Pause. In December 2024, the DOT issued a rule making the mishandling of a wheelchair an automatic violation of the Air Carrier Access Act. The centerpiece sits in 14 CFR 382.130(a): an airline must return a checked device in the condition it received it, and when it fails to, a rebuttable presumption kicks in. The airline is presumed to have broken your chair, and the airline has to prove otherwise. On September 30, 2025, the DOT delayed enforcement of that presumption until December 31,...

What the paused DOT presumption means for proving damage, how to document your chair before handoff, and how to file a claim.

Wheelchair Damage During Air Travel: How to Protect Your Chair and File a Claim

You have five programs in a browser tab, and every one of them uses the word "certified" somewhere on the homepage. One shows a golden retriever in a vest. One mentions PATH International. One says its founder is a certified animal-assisted therapy practitioner, which sounds official right up until you try to find out who certified her. The word is doing different work on each of those pages. Sorting out which kind of certified you are looking at takes about ten minutes once you know the categories, and it changes what you are paying for. Certified Covers Two Separate Things. In a legitimate animal-assisted therapy session, two things have been vetted, by two different bodies, on two different schedules. The first is the animal and handler working as a team. A registering organization has watched them together, tested the animal's temperament around wheelchairs, dropped equipment, unsteady footing, and sudden noise, and put the pair on a renewal cycle. The second is the person delivering the treatment. That is a professional license issued by your state to an occupational therapist, physical therapist, speech-language pathologist, counselor, or psychologist. The animal's registration says nothing about it. Programs that blur the two are where families lose money. A registered therapy dog visiting a classroom is a visit, and it can be a lovely one. It becomes therapy when a licensed clinician sets treatment goals and works with the animal inside their scope of practice. What the Animal's Registration Confirms. Pet Partners is the largest...

The word certified covers two separate things in animal therapy: the animal's registration and the clinician's license.

Finding a Certified Animal Therapy Program: What Credentials to Look For

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Articles

Cardiac Risks for Female Carriers of Duchenne Muscular Dystrophy

How Trial Work Period Lets You Test Employment Without Losing SSDI

Alexithymia and Asperger Syndrome: Difficulty Identifying Emotions

Kansas Won Federal Approval for 500 Disability Waiver Slots That Open October 1

CMS Ended the Fast-Track Renewal Path for the Section 1115 Waivers That Fund Home Care in Seven States

Therapy Dogs in Schools: How Canine Programs Support Students with Special Needs

Remote Work as a Permanent Accommodation: Negotiating Long-Term Telework After Disability

Natural Learning Environments in Early Intervention: Why Your Child's Therapy Happens at Home

Illinois Lawmakers Sent the Governor a Bill Requiring Private Equity to Disclose Disability Group Home Purchases

Oregon Is Weighing Cuts to Physical Therapy, Prosthetics, and Autism Care for Medicaid Members

Wheelchair Damage During Air Travel: How to Protect Your Chair and File a Claim

Finding a Certified Animal Therapy Program: What Credentials to Look For

Find Providers Near You

Special Needs Articles

Cardiac Risks for Female Carriers of Duchenne Muscular Dystrophy

How Trial Work Period Lets You Test Employment Without Losing SSDI

Alexithymia and Asperger Syndrome: Difficulty Identifying Emotions

Kansas Won Federal Approval for 500 Disability Waiver Slots That Open October 1

CMS Ended the Fast-Track Renewal Path for the Section 1115 Waivers That Fund Home Care in Seven States

Therapy Dogs in Schools: How Canine Programs Support Students with Special Needs

Remote Work as a Permanent Accommodation: Negotiating Long-Term Telework After Disability

Natural Learning Environments in Early Intervention: Why Your Child's Therapy Happens at Home

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