Part 2 of a series

Reporter Erika Schultz, writing in the Seattle Times, documents the lives of 65-year-old Ron Johnson and his 41-year-old son Ronny, who has autism and is nonverbal. Ron had been managing as the sole caregiver for Ronny and was determined to do so indefinitely, but emergency heart surgery intervened.

Ron’s health emergency pushed Ronny to the top of the waiting list for state-provided care, and so he’s now able to live in a group home. But Ron’s not sure the placement is a good solution for his son — or for himself.

This story is part of a Times series on people with intellectual disabilities who outlive their caregivers. See earlier post here: For adults with intellectual disabilities, an uncertain future.

From the Kansas City Star:

An estimated one in 26 American families is raising children with disabilities, yet more than 80 percent of parents of these children have not established a special-needs trust.

A special-needs trust provides financial protection to those with disabilities, and also preserves their eligibility for Medicaid, Social Security income and other need-based benefit programs.

Experts say such a trust could preserve medical benefits worth hundreds of thousands of dollars over the life of the individual. The trusts help people get services they are entitled to receive through government programs.

The story contains tips for doing financial planning for children with disabilities, as well as resources for more information.

From the Sydney [Australia] Morning Herald:

Expectant mothers will be able to insure their unborn babies against pregnancy complications, birth defects and even death under a new policy offered by insurance giant ING. The program is called the first of its kind in Australia, possibly the world, and will be aimed at the growing population of older mothers. Premiums rise with the age of the mother.

The policy will pay $50,000 to mothers whose children have disabilities such as blindness and deafness or other congenital malformations, including spina bifida, Down syndrome, cleft palate and heart disorders.

A spokeswoman for an Australian midwives association criticized the new program. “Insurance companies are going to go wherever they can to make a buck,” she said. “Fifty thousand dollars is not going to go very far in caring for a sick child. It is marketing fear and uncertainty when women are vulnerable during pregnancy.”

Writing in National Public Radio’s “This I Believe” series, Donald Rosenstein explains how his family has adapted and grown, thanks to his son Koby’s diagnosis of autism.

That Koby has autism is old news at this point. We’ve grieved, survived and adapted. We’ve learned to be more patient, to celebrate more modest victories, and to connect with Koby whenever and however we can. Now, when Koby flaps, I’m happy for him and what it means about his engagement, not sickened by what it might mean for his and our futures.

… I believe that “reframing a problem” can help to overcome it. But adaptation is not the same as becoming tolerant of or inured to something. Adaptation allows for creative possibilities. Koby has adapted to us and we to him, and through this process our family has discovered deep and meaningful connections with each other — connections we never thought possible.

Dr. Donald Rosenstein is the clinical director of the National Institute of Mental Health, specializing in psychiatric care of the medically ill.

Earlier post here.

From the St. Petersburg Times:

Elementary school students in San Antonio, Florida, are benefiting from a new inclusion program that allows students with and without disabilities to be educated together in classrooms that accommodate each student’s individual learning style.

The change was introduced by new principal Vanessa Hilton, who explained that education for students with disabilities “should be a service rather than a place.” Students and parents were nervous about it at first, but came to realize that the inclusion class setup has improved academic achievement for all types of students. “We work all together and help each other to get smarter,” said Gracie Britton, 10.

“I can’t tell who is who,” said a special ed teacher in training who sat in on one of the classes.

From the Seattle Times, the first of a two-part series on the changing needs of adults with developmental disabilities. For years, their parents have cared for them, saving the government untold millions of dollars. But what will happen when their caregivers can’t do it any longer? And who will pay?

James Jensen, 47, is part of the first generation of people with developmental disabilities likely to outlive their parents in great numbers. His parents are in their early 80s, and are showing signs of slowing down. James, who has Down syndrome, has always lived with them. His mother, Delores, says he is a blessing.

When James was small, families routinely sent their children with Down syndrome to institutions — as Delores Jensen was urged to do with her son. Nowadays institutionalization is rare, but the state has not planned or funded services to take care of people like James after their families are unable to do so.

Delores’ plan, a friend concludes, is to live forever.

Related stories from the Seattle Times:

• Change in social attitudes helps lengthen lives
• Providing for future poses extra challenges
• Services in short supply
• People with Down syndrome are living longer
• Where to get help

Jeff D. Opdyke, writing in the Wall Street Journal, says he and his wife were skeptical when their daughter’s speech therapist recommended tripling her weekly sessions at a cost of nearly a thousand dollars a month. Their insurance provider doesn’t cover the service, and their personal finances can’t stretch indefinitely. When should they decide enough is enough?

… at some point, most of us in this situation have to face the fact that our resources are limited, especially when money doesn’t guarantee a quick cure, or perhaps even a cure at all.

… Throwing money at her disability seems the only option at the moment. Still, Amy and I know we can’t continue funding this cost for a long time. At some point, we’re going to have ask if this is really something that money can fix … or if this is simply who our daughter is.