Lina Torres, 70, is mom to Manuel, a 29-year-old adult with significant physical and intellectual disabilities. She and her husband diligently care for their only son 24 hours a day, seven days a week. “If I were to die today, even though I’m hoping to reach 100 years, Manuel would die as well.”

Manuel Alberto, as his mom calls him, is entirely dependent on his parents. Unable to walk or speak, “we are his eyes, ears, and hands,” said Torres.

Although Manuel attended school until the age of 28 under the special education program, his parents felt the system did not provide the services he needed. Inclusion, they quickly realized, would never be possible.

To fill those gaps, Lina and her husband took matters into their own hands, seeking advice from the National Association for Child Development, or NACD, an organization that designs individual programs to support parents in helping their children achieve their innate potential.

For the last 17 years, Lina and her husband have been practicing the daily exercises and activities suggested by NACD. While he is still unable to walk, Lina celebrated that these activities have allowed them to ambulate him throughout the house with the help of assistive devices. “He is able to do two or three steps,” said Lina, and for them, that is an achievement on its own.

Doing these exercises requires great physical strength, and as the years go by, it becomes harder. Lina has recently faced numerous health problems, which have forced them to reduce the intensity and frequency of these activities.

She said prioritizing Manuel’s needs has factored into her and her husband putting off their medical appointments. “Our main concern [now] is taking care of ourselves so we can last longer for our son and provide him with quality of life, but we also need quality of life.”

Being a full-time caregiver can take a backbreaking toll on a person’s physical and emotional well-being. These families are often encumbered by onerous medical bills and lack of skilled care for their loved ones, given the often complicated medical issues that require a high level of expertise in handling specialized equipment such as tracheostomy tubes, ventilators, and gastric feeding pumps, among others.

According to the Puerto Rico Ombudsman for People with Disabilities, 22% of the population identifies as living with one or more disabilities. Children who have a disability in Puerto Rico are eligible to receive benefits under the Social Security Disability Insurance, which can help ease the economic burden for the family, even as they transition into adulthood. Additional economic assistance is available for children living in the continental U.S. under the Supplemental Security Income. However, those living in Puerto Rico are ineligible.

Providing Much-Needed Respite

Many studies have demonstrated that respite services can improve resilience among caretakers and their families. These services, however, are scarce in Puerto Rico. One of the few organizations addressing this dearth of resources is the nonprofit organization Apoyo a Padres de Niños con Impedimentos, or APNI, which translates to “Support for Parents of Children with Disabilities.” For 46 years, APNI has provided parents like Lina with information, training, orientation, and support services to uphold their children’s rights.

APNI has implemented a respite care program that trains and certifies assistants to provide a much-needed break for the families they serve. Celia Galán, APNI’s executive director, said that it has been challenging to obtain funding to maintain this type of project that is beneficial to these families. Direct Relief awarded APNI a $250,000 grant to expand respite services for families with children with disabilities.

Funding allows APNI to provide up to 30 hours per family for 12 months, and families can distribute them according to their needs. Respite care service assistants support families at home or at the Neonatal Intensive Care Unit.

APNI tries to find respite workers with similar experiences to better assist parents. Parents who have been through the difficult process of having their children in NICU are best able to guide and support other parents going through such stressful circumstances.

Impact Beyond Measure

Providing respite services, whether at home or in the hospital, can also be difficult as these parents ache to spend every waking moment next to their children. Through their program, APNI helps parents get to know these caregivers so that they feel comfortable taking some time for themselves. “It’s wonderful to see the beautiful comments parents leave in the evaluations after they decided to try the service, that they finally deposited their trust in someone and what it meant for them the break they received,” said Galán.

Carmen Rivera, 47, who asked that her name and that of her son be withheld to protect their privacy, has a six-year-old diagnosed with autism and attention deficit disorder. He currently attends the mainstream school system and receives five therapies after school. While Carmen’s situation differs from Lina’s, she has also received respite services from APNI.

Both Carmen and her husband work from home in marketing and event planning. They have been working hard to recover from the Covid-19 pandemic, which disrupted their jobs and significantly affected their income. “We are aware that we are in a stage where we need to be financially stable, and we want to ensure that [our son] also has a stable future,” she said.

Due to her son’s condition, self-employment was the best way to dedicate time to caregiving. She picks him up from school at 3 p.m. and then takes him to therapy. Respite services have allowed Carmen and her husband to continue working. “Sometimes I’m on a call or tending to clients, and my son comes to me and interrupts me, so in that sense having these services during those few hours to finish the work is invaluable.”

She added that APNI has been incredibly accommodating in finding respite personnel who are active and able to manage her son’s needs. The two caregivers assigned to their family have formed a strong bond with him. To facilitate their work, Carmen leaves them a daily work plan to help him with his summer reading or reviewing school lessons, among other things.

To date, APNI has provided respite services to more than 30 families. For Lina, respite services have allowed her to go to medical appointments, enjoy some free time with her husband and even rest. “I felt so tired that I just told the lady who was helping me, ‘I’m just going to rest.’ And I spent a couple of hours resting because the body feels it.”