Publications - Intellectual and Developmental Disabilities

A mystery illness stole their kids’ personalities. These moms fought for answers., by Richard Sima, The Washington Post, May 12 2024.

“Regression symptoms in patients with Down syndrome were identified as early as 1946, but the condition was often misdiagnosed as either early-onset Alzheimer’s disease or late-onset autism. Its effects can be devastating. When someone with Down syndrome regresses, the decline can be precipitous and dramatic, with patients losing function in days or weeks, including the ability to talk, move or take care of themselves. Some, like Sara, can enter a catatonic state or suffer from hallucination and depersonalization, leaving loved ones desperately searching for answers and help. It was only in 2022 that the condition was finally given an official name: Down syndrome regression disorder, or DSRD. Though its prevalence is difficult to measure, DSRD is believed to affect between 1 to 5 percent of people with Down syndrome. ”

16,000 people with disabilities are in state-operated institutions. This is how experts say health care should change., by Michael Roppolo, CBS News, Apr 30 2024.

“More than 16,000 people with intellectual and developmental disabilities, or IDD, are housed in institutions in the U.S., reports the Residential Information Systems Project. While that's significantly lower than nearly 200,000 people in the 1960s, there is more work to be done, says disability rights activist Rebecca Cokley.  A 2011 review of 36 studies showed nearly 5,000 people with IDD found positive change after moving from large institutions to community living. Institutions also serve as a reminder that when we create structures that are separate, they are rarely equal, a concept with roots in racism and slavery, the Cokleys say.  A 2020 study published in the journal Rehabilitation Psychology looked at health care providers' attitudes towards people with disabilities. It found that while only a small segment explicitly preferred nondisabled people, a majority of providers implicitly favored people without disabilities.  Unfair treatment, in turn, means many patients with disabilities are delaying medical care, a 2022 survey reports — or not getting it at all.  ”

Even with insurance, getting mental health treatment is a struggle in Mass., study says, by Liz Kowalczyk, Boston Globe, Dec 11 2018.

“Massachusetts residents who need health care are colliding with a hard reality: Having medical insurance doesn’t guarantee you can get treatment, particularly for psychiatric problems. More than half of adults who sought mental health or addiction treatment in recent months had difficulty getting that care, according to a survey of 2,201 residents by the Blue Cross Blue Shield of Massachusetts Foundation in Boston...The obstacle wasn’t a lack of insurance; the vast majority of patients were insured. Rather, the problem was that providers either did not accept their insurance or their practices were closed to new patients. ”

States may now broaden mental health treatment under Medicaid, by Michael Nedelman, CNN, Nov 13 2018.

“The Centers for Medicare and Medicaid Services may now allow for states to pursue Medicaid reimbursements for short-term inpatient treatment in mental health facilities despite a decades-old exclusion, Health and Human Services Secretary Alex Azar announced Tuesday. In a letter to state Medicaid directors, CMS detailed a new Medicaid waiver opportunity through which states may bypass longstanding reimbursement restrictions on inpatient psychiatric treatment, which apply to mental health facilities with more than 16 beds. Azar said the original policy has posed a "significant barrier" to people getting the treatments they need. ”

States Aim To Halt Sexual Abuse Of People with Intellectual Disabilities, by Joseph Shapiro, NPR, Jun 25 2018.

“NPR explores the proposal for a law to protect those living with an Intellectual and/or Developmental Disability from abuse by a caregiver. The proposal is for a registry of abusive caregivers be available to the public. This 4 minute video highlights the states that have enacted a similar law, and the steps being taken in Massachusetts to do the same. ”

The Sexual Assault Epidemic No One Talks About, by Joseph Shapiro, NPR, Jan 8 2018.

“[Pauline's] story NPR found in a yearlong investigation, is a common one for people with intellectual disabilities. NPR obtained unpublished Justice Department data on sex crimes. The results show that people with intellectual disabilities — women and men — are the victims of sexual assaults at rates more than seven times those for people without disabilities. It's one of the highest rates of sexual assault of any group in America, and it's hardly talked about at all. ”

Some mothers may not seek early help for kids with developmental delays, by Lisa Rapaport, Reuters, Oct 16 2017.

“When mothers trust their friends and neighbors more than doctors or struggle to access or afford care, they may be less likely to seek out medical help for young kids with developmental delays, a small U.S. study suggests...The study team interviewed 22 low-income mothers of African-American and Latino children up to 36 months old who qualified for Early Intervention...'Many mothers in our study experienced challenges accessing early intervention services due to logistical challenges or competing social and financial stressors that resulted in delayed or forgone care,' Magnusson said by email. 'These findings highlight the importance of supporting families throughout the referral process and helping to address their social and financial needs.'   ”

Many Young Adults With Autism Also Have Mental Health Issues, by Tara Haelle , NPR, Oct 1 2017.

“Young adults on the autism spectrum are more likely to also have been diagnosed with a psychiatric condition, such as depression, anxiety and attention deficit hyperactivity disorder (ADHD) than are typically developing people or those with other developmental disabilities, a study finds. And managing those multiple conditions can make the transition to young adulthood especially difficult. ”

LGBTQ People With Developmental Disabilities Need Respect, Privacy, and Access to Community, by Jennifer Smith, Jun 22 2017.

“Forging healthy relationships often depends on the availability and willingness of supportive staff to facilitate such interactions. But the direct support profession is in peril, facing high turnover, low wages, limited training, and ineffective supervision, according to the American Association on Intellectual and Developmental Disabilities. The AAIDD has called for more professional development opportunities so direct support professionals can handle their increasing responsibilities. As direct support professionals are thrown into more autonomous roles without proper supervision or training, they may be unwilling to tackle touchy subjects like sexuality and gender identity ”

Parental obesity may be tied to developmental delays in kids, by Lisa Rapaport, Reuters, Jan 5 2017.

“Kids born to obese parents may be more likely to experience certain developmental delays early in childhood, a recent study suggests. Based on parents’ reports, children with obese mothers were 67 percent more likely to have delayed fine motor skill development by age 3 compared to kids with normal or underweight mothers, even after accounting for the father’s weight, the study found. With obese fathers, children were 71 percent more likely to have deficits in personal and social skills after taking their mothers' weight into account, the study also found. ”

A Sibling’s Role in the Social and Academic Development of a Child with Disabilities, by Anna Maria Charalambous, Psych Central, Dec 22 2016.

“Siblings to children of disabilities are a key element to the social development of their handicapped sibling. Brothers and sisters have a lifelong relationship with one another that tends to extend past the relationship they have with parents. Siblings are their own first social network. Understanding and empowering a non-handicapped sibling could turn feelings of resentment, guilt, anger, and jealousy into positive actions of helpfulness and effective teaching. Educators should be aware of the ways that sibling can be both a positive influence and outside resource for a student with disabilities. ”

Children with Disabilities may not get enough exercise in school, by Madeline Kennedy, Reuters, Oct 6 2016.

“Exercise is important for all children but children with disabilities rarely get the recommended 60 minutes per day.  Children with severe disabilities get the least amout of exercise.   ”

What happens to developmentally disabled as parents age, die?, by Jen Fifield, www.pbs.org, Aug 10 2016.

“"About 860,000 people over 60 nationwide are in Beth’s place, caring for someone with intellectual or developmental disabilities in their home. And many are waiting, sometimes for years, for state-provided Medicaid help for their disabled child, sister or brother, such as placement in a group home, day services, or transportation or employment programs. If they can’t afford to pay for these services on their own, under the federal-state Medicaid system, their relative could end up in an institution." ”

People with Intellectual Disability Should Be Careful on Social Media, by Rick Nauert PhD, PsychCentral, May 20 2016.

“New research finds that people with developmental delays, learning disabilities, and other intellectual issues are vulnerable to online victimization. In a first-of-its-kind study, researchers found that adults with Williams syndrome – and who use Facebook and other social networking sites frequently — are especially vulnerable to online victimization. Williams syndrome is a condition characterized by an individual being extremely social and trusting. ”

Future Planning for your Intellectually Disabled Child, by Marie Hartwell-Walker, Ed.D., PsychCentral, May 17 2016.

“If you are in your mid to late 50s or older and have an intellectually disabled adult child living at home, you are part of the first generation whose disabled kids may well outlive them. Advances in neonatal medicine saved your baby’s life. Advances in medical care have made it possible for your child to have a normal or close to normal lifespan. You refused your well-meaning doctor’s advice to institutionalize your intellectually disabled kid in the 1940s, ’50s, or ’60s. You have loved and cared for him (or her) and you’ve done your best to raise him, protect him, and include him fully in family life for 30 to 60+ years. Maybe you are beginning to feel your age. Maybe your health and strength are failing. Your child has been the center of your life for decades and depends on you to be the buffer between him and the world. One day you wake up and realize you are faced with a new and frightening dilemma: Who will provide the same love and care when you are too old or frail or sick to manage or when you are gone? It’s a familiar worry for every parent of an adult child with intellectual disabilities. ”