Heather Johnson, 38, picks her daughter Adaline, 5, up from school. Adaline has Pitt-Hopkins Syndrome, a rare genetic disorder that causes developmental delays and intellectual disabilities, among other health conditions.

Adaline washes her hands after school with the help of her mom.

Adaline is non-verbal and still wears a diaper because she can’t communicate that she needs to use the bathroom. She needs constant care.

After school Adaline lays in her bed with one of her favorite toys.

Walking and moving around is very important in Adaline’s daily routine.

The only help Johnson has in taking care of her daughter is for a few hours in the morning. The Johnsons qualify for home health care coverage to care for Adaline, but workforce shortages are so acute in the industry they have been unable to get help.

Johnson, 38, helps her daughter Adaline get out of her bed at their Searsport home.

Johnson feeds her daughter after school. She can’t work because she can’t secure home health services. Under current MaineCare rules, she can’t get paid to be Adaline’s caregiver, although an outside caregiver could be paid.

Food scraps and medicine after Adaline was fed by her mom.

Adaline gets ready for a nap. She doesn’t always nap after school, but when she does Heather Johnson can’t pick up her boys, so her husband, Andrew, has to leave work earlier.

Andrea Dole, 42, transfers her son James, 7, who has microcephaly and cerebral palsy, into her car with the assistance of Kathy Anderson, the aide at James’ school, and Richard O’Brien, James’ nurse.

Andrea Dole is the caregiver for her son James. She does receive some home health assistance, buts she’s still unable to work another job because of the amount of care he needs. She’s had 17 nurses in the past five years.

One of James’ favorite things to do is to be on the swing. Richard O’Brien, the home nurse, swings him at home in Belfast.

Caregiver Richard O’Brien gives James, 7, 6 ounces of water four times a day. James also receives a little water that he sips from his honey bear bottle with a straw and a little bit through a tube after meals.

Syringes and equipment used to give James water.

James has different toys he uses for stimulation.

After years of therapy, James can now walk a few steps with assistance and may one day be able to feed himself. He is unable to get into or out of his bed by himself.

James practices standing with assistance from his mother.

Like babies who do tummy time, James spends time on his tummy to strengthen his muscles. While assisting James, Andrea Dole also looks after her son, Rafe, who plays with a ball.

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