‘2 brothers, 2 different sets of rights’

From the Reno [NV] Gazette-Journal:

Six-year-old Alexander Grant has a tax-free bank account that lets his parents save for his college education. Nothing comparable is available for his 11-year-old brother, Elliott, who has Down syndrome.

“Elliott doesn’t have the same account because the government seemingly thinks disabled people should live in poverty.”

Adults with disabilities can’t earn more than $750 a month or they lose their federally guaranteed Medicaid health coverage; nor can they have more than $2,000 in a savings account.

(more…)

From the Chicago Sun-Times:

A new Illinois law increases the amount of income and assets that workers with disabilities can have before they become ineligible for Medicaid insurance.

The changes are significant because not every job offers health insurance, and people with disabilities are most often not able to get private insurance with adequate coverage. Many people with disabilities across the country are not able to work as they might like for fear of jeopardizing their Medicaid health coverage.

Previously, Illinois’ annual income limit for Medicaid coverage was about $21,000 for individuals, or $44,000 for a family of four. It has been raised to $38,000 for an individual, or $75,000 for a family. The new law also allows workers with disabilities to have up to $25,000 in assets instead of $10,000.

“With these limits, you can go into a position that would move you into the middle class,” said John Coburn, senior policy attorney for a disability advocacy group in Chicago.

From the Denver Post, 9News.com (NBC affiliate in Denver), Rocky Mountain News:

Advocates in Colorado are promoting the creation of a state-backed investment fund to help pay for the long-term care of people with developmental disabilities. The proposal comes after the resounding defeat last month of Amendment 51, which would have raised the state sales tax by a fraction of a percent to provide services for the thousands of people who are currently stranded on state waiting lists.

Under the plan, unveiled at a meeting of the legislature’s Joint Budget Committee, the state would contribute 25 cents for every dollar invested on behalf of a person with a developmental disability. Committee members made no commitments.

Amendment 51 failed with 62.4 percent of voters saying no.

From the Wall Street Journal:

A growing number of financial service companies are springing up to help parents provide for the future care of their children with disabilities. They help navigate the maze of federal and state programs, and assist parents in setting up trusts, coordinating estate plans, and educating future caregivers.

These tasks have become increasingly vital as people with disabilities are living longer than ever before, frequently outliving the parents who support them.

Miami lawyer Barry Nelson (far left) set up a special-needs trust for his fourteen-year-old son Jesse, who has autism. The trust will be funded by life insurance when Nelson dies, and can be used to pay for expenses beyond what Medicaid or SSI would pay for.

Nelson says a special-needs trust “gives me — and it gives every parent — peace of mind.”

A sidebar provides a list of financial planning resources.

(Wall Street Journal photo)

U.S. News & World Report lays out a list of tips for financial planning on behalf of children with disabilities. Many of these kids will require financial support throughout their lives, writes Kimberly Palmer. Government programs can cover some basic medical care, but people will lose eligibility if they have more than $2,000 in assets. Parents need to use wills and trusts to ensure that kids will have the support they need when they grow up.

Among her suggestions:

• Establish legal guardianship;
• Protect your child’s eligibility for public benefits; and
• Think about insurance policies and special-needs trusts.

From the CBC (Canadian Broadcasting Corporation), the Ottawa Citizen and The Canadian Press:

A recent Statistics Canada survey reports that parents of three out of five children with a disability make adjustments in employment as a result of their child-rearing responsibilities. Mothers said overwhelmingly that their jobs were affected. The study did not include comparisons with families of children without disabilities.

Parents said the adjustments could include working fewer hours, arranging work schedules to accommodate children, turning down promotions, or quitting jobs. The survey also found that parents experience challenges finding day care. One out of five respondents said that day care facilities or programs had refused to accept their children with disabilities.

NPR follows 18-year-old Roger Diehl as he starts his freshman year at the University of Wisconsin in Madison. Roger was an A-student throughout high school, but the prospect of leaving his Nashville home to go to college has been especially challenging for him and his family. Roger has ADHD and autism, and has had recurrent bouts of clinical depression.

He and his family have made college plans that build in supports for him, and have obtained legal documents that will allow a family member to make medical and financial decisions on Roger’s behalf if he becomes incapacitated. “I actually feel that it’s adding to my independence, because I feel they’ll be more responsive to my wishes than someone I don’t know,” he said.

Also on NPR: Why my autistic son misbehaves — commentary by Jennifer Hendrick