Disabled People Require Services throughout Their Lives

In Washington state, a bill that ensures the continuity of developmental disability services for children was unanimously passed in both the State House and Senate. It will now be signed into law by Governor Jay Inslee. Representative Jamila Taylor (D-Federal Way) was the bill’s sponsor.

According to Thursday’s news release, if a child is determined to be eligible for Department of Social and Health Services (DSHS) before the age of three, eligibility in Washington currently expires on the child’s fourth birthday. HB1407 would prohibit the termination of services or the redetermination of eligibility for a child under 18 based on age.

Over 170,000 people in Washington state have intellectual and developmental disabilities. Spina bifida, autism, fetal alcohol syndrome, and cerebral palsy are all intellectual and developmental disabilities. IDDs are conditions that manifest before age 22 and significantly impact an individual’s physical, intellectual, or emotional development. Many of these conditions affect multiple organ systems or body parts.

Washington ranked 37th in the nation in terms of spending on services for people with IDD. Over three-quarters of the population receives no services. The overwhelming majority of those that do are white. Since the 1980s, there has been no significant investment in housing for people with IDD.

It’s the same across much of the United States. The United States has around 7.4 million people with intellectual and developmental disabilities. According to a 2017 report from the U.S. Department of Health and Human Services, only 20% of them, however, receive services from a state agency.

Nationwide, adulthood means uncertainty for disabled people and their families. In March of 2021, 20-year-old Alexia Trimarchi was cared for by her home health nurse, Aziza Hankins. Trimarchi lives with her family in their home in the Rosebank section of Staten Island.

Trimarchi has cerebral palsy, epilepsy, and hydrocephalus. Hydrocephalus is a condition in which excess cerebrospinal fluid (CSF) accumulates within the fluid-containing cavities or ventricles of the brain. Symptoms include nausea and vomiting, lethargy, seizures, and an abnormally large head circumference.

When she turns 23 next year, New York State will consider her a medically fragile adult. Her birthday will bring unwelcome changes for the Trimarchi family. Their daughter’s nurses will experience a drastic decrease in their salaries.

Alexia is one of approximately 1,500 medically fragile children in New York State who receive private-duty nursing care through Medicaid. Medically fragile children need ongoing nursing care to keep them alive. Furthermore, many rely on critical interventions such as feeding tubes, ventilators, and supplemental oxygen.

Losing in-home nursing care could be a matter of life or death. Yet, the situation is untenable for the nurses. When medically fragile children reach the age of 23, the nurses who care for them lose around 30 percent of their hourly wage.

Hankins has worked with Alexia since childhood. She currently makes $32 an hour as Alexia’s private duty nurse. Unfortunately, she will make nearly $10 less an hour in 2024. Hankins will earn $23 an hour once Alexia turns 23. Hankins worries that she will have to leave the job she loves to survive.

Alexia cannot speak, but she has a special bond with Hankins. “She has a loud personality trapped inside of her body, and she is very specific about things she likes,” Hankins said. Alexia is also hilarious, according to Hankins.

Medicaid rates for private-duty nursing had been stagnant for more than a decade. Eventually, after years of lobbying, the Department of Health gave nurses who care for medically fragile children a series of three raises, the second of which went into effect in April, 2021. As an additional “enhancement,” the state increased salaries by 30%. All of these financial benefits, however, are lost once patients reach adulthood.

Private-duty nurses, like Ms. Hankins, are often paid significantly less than nurses in hospitals, where nurses with similar skills earn close to a six-figure salary, plus health benefits, vacation time, and sick days. Private-duty nurses often do not receive benefits because they are independent contractors. Those who pursue the specialty, on the other hand, frequently do so because they like working with individual patients and prefer the freedom to choose their assignments.

Other nurses stay with their patients after the age of 23. Thomas Ilaridis is cared for by Patricia Menyuah. Ilaridis, who has myotonic dystrophy, has been cared for by Menyuah since 2014 and has grown close with her. Menyuah now works 60 hours per week to compensate for her lost wages.

Myotonic dystrophy (DM) is an autosomal dominant neuromuscular disease characterized mainly by myotonia and increasing muscle weakening. Myotonia is a neuromuscular disorder that impairs muscle relaxation. It can affect any muscle group. Repetitive actions are frequently required to relax the muscle, while the condition typically improves after the muscles have warmed up.

The Trimachis fear that Alexia will end up in a group home. Her quality of life will change. Placement in a group home will also end up being more expensive for the state. According to Community Resources Staten Island, a nonprofit provider of residential services, caring for a medically fragile child in a group home costs New York State $135,000 to $156,000 a year, compared to an average of $69,000 for in-home care.

Disabled children grow up into disabled adults. An autistic child becomes an autistic adult, and a child with cerebral palsy becomes an adult with cerebral palsy. Disabled adults still need support. More must be done to ensure that all disabled people receive the services and support they need regardless of age.


“About Intellectual and Developmental Disabilities (IDDs).” Eunice Kennedy Shriver National Institute of Child Health and Human Development, U.S. Department of Health and Human Services, https://www.nichd.nih.gov/health/topics/idds/conditioninfo.

Conrad, Jordan A. ‘On Intellectual and Developmental Disabilities in the United States: A Historical Perspective’. Journal of Intellectual Disabilities, vol. 24, no. 1, SAGE Publications Ltd, Mar. 2020, pp. 85–101, https://doi.org10.1177/1744629518767001.

Florio, John, and Ouisie Shapiro. “Should Nurses Take a 30% Pay Cut When Their Patient Turns 23?” The New York Times, The New York Times Company, 30 Apr. 2021, https://www.nytimes.com/2021/04/30/nyregion/medically-fragile-nurses-salary.html.

“Hydrocephalus.” American Association of Neurological Surgeons, American Association of Neurological Surgeons, https://www.aans.org/en/Patients/Neurosurgical-Conditions-and-Treatments/Hydrocephalus.

Latham, Shawn E. “Invest in Housing for Those with Developmental Disabilities.” The Seattle Times , The Seattle Times Company, 24 Mar. 2023, https://www-seattletimes-com.cdn.ampproject.org/c/s/www.seattletimes.com/opinion/invest-in-housing-for-those-with-developmental-disabilities/?amp=1.

LeCompte, Michael. “Bill Ensuring Disability Services Continuity to Become Law.” NBC Right Now, Cowles Company, 14 Apr. 2023, https://www.nbcrightnow.com/news/bill-ensuring-disability-services-continuity-to-become-law/article_d67cc23c-da25-11ed-9ea4-cf187905aca8.html.

“Myotonia.” National Institute of Neurological Disorders and Stroke, U.S. Department of Health and Human Services, https://www.ninds.nih.gov/health-information/disorders/myotonia.

Schalock, Robert L., et al. Intellectual disability: Definition, classification, and systems of supports. American Association on Intellectual and Developmental Disabilities. 444 North Capitol Street NW Suite 846, Washington, DC 20001, 2010.

Silverman, Amy. “Million-Dollar Question: How to Find Safe Homes for Those with Complex Needs.” Center for Public Integrity, Center for Public Integrity, 19 Dec. 2022, https://publicintegrity.org/health/institution-of-one/find-safe-homes-people-with-disabilities/.

Yum, Kevin, et al. “Myotonic dystrophy: disease repeat range, penetrance, age of onset, and relationship between repeat size and phenotypes.” Current opinion in genetics & development vol. 44 (2017): 30-37. doi:10.1016/j.gde.2017.01.007

Leave a Reply

%d bloggers like this: