People with developmental disabilities need reproductive care too — but who will provide it?

Retirement is not yet here for Melanie Ornstein, but she’s already worried. When the time comes, who will take on her patients with developmental disabilities?

“Many clinicians aren’t prepared to care for this population, yet they might encounter them in their practices,” says Ornstein, associate professor of obstetrics and gynaecology the University of Toronto's Temerty Faculty of Medicine, and on staff at Michael Garron Hospital. “We need more education around the developmentally disabled.”

The patients in this population require more time, more coordination, and often rely on caregivers and aging parents. And after a lifetime of being medicalized, they may be suspicious of the medical system and often feel judged.

Part of the challenge for the clinician is in the range of disabilities, from those with severe impairments, cognitive or physical or both — someone who is unlikely to be sexually active — to high‑functioning individuals.

“A young woman with Down syndrome, whom I’ve known for years, now has a partner with a mild intellectual disability. They talk openly about wanting children,” says Ornstein. “She’s able to articulate that she doesn’t want to get pregnant right now, wants contraception, and wants to understand sex — what it will feel like, what will happen.”

Another of Ornstein’s patients, who is pregnant for the first time, has mild cerebral palsy and requires specific accommodations to mitigate the physical challenges of her spasticity during exams, such as leg abduction and speculum selection.

Ornstein has been collaborating with the organization Surrey Place to provide reproductive education to individuals with developmental disabilities. The program covers preconception care, contraception, the decision to pursue pregnancy, as well as giving birth, postpartum issues, and raising a child. 

Such programs didn’t exist when Ornstein was starting out. She began her career as an early childhood educator, working with children and adolescents with developmental disabilities in a facility setting. She transitioned into occupational therapy and then spent many years in the NICU at Women’s College Hospital, in the neonatal follow-up program for preterm infants. She then pursued a master’s in education at OISE, followed by U of T medical school.

She now runs the Open Arms Ob/Gyn clinic alongside two other physicians. Over the years, patients with developmental disabilities have grown to account for about 15 per cent of her practice, though they require twice the time commitment of her able-bodied patients. 

The most common request that she receives is for menstrual suppression, a reversible treatment only considered after puberty since estrogen is vital to healthy physical development. 

There are valid medical reasons for menstrual suppression. For those with seizure disorders, for example, hormonal fluctuations during the menstrual cycle can trigger what’s called catamenial seizures, which are more intense or frequent than usual. 

Often it’s a quality-of-life decision, to manage hygiene or pain. For someone who is non‑verbal or otherwise unable to communicate, menstrual pain may present itself as behavioural changes, resulting in aggression or self‑injury.

“Parents of profoundly disabled children often say it’s been a game changer,” says Ornstein. “Their child is happier. They’re happier. They can attend school or day programs consistently. Life becomes just a little easier for everyone involved.”

Ornstein recognizes the underlying fear that accompanies the initial consultation.

“So often it’s about unpacking what the parents are really worried about,” she says. “They come in saying they’re worried about periods, but really they’re worried about pregnancy — or abuse, which happens at a rate significantly higher than the able‑bodied. Or whether their child can manage everyday gynaecological issues.”

Also, reproductive health care doesn’t end with the reproductive years but is needed across the lifespan. More and more, Ornstein is receiving referrals for women with disabilities in the perimenopause and menopause years.