WSJ: In a Group Home, Caring for Disabled Takes Toll on 'Ma'

[question everything]

Frayed Lifeline

In a Group Home, Caring for Disabled Takes Toll on 'Ma'

With Trio Dependent on Her, Sarah Ahmed Must Juggle In $12.06-an-Hour Job

A Policy Shift's Costly Legacy

By CLARE ANSBERRY
Staff Reporter of THE WALL STREET JOURNAL
December 15, 2004; Page A1

JOPPA, Md. -- After 17 years working with the developmentally disabled, Sarah Ahmed's base salary is about $25,000, which is why she frequently works overtime. A widow with two boys, she arrives at Clayton House, a brick ranch home on two acres, at 4 p.m. and leaves at 8 a.m. the next day. While there, she takes care of three adults, all needing help with basic tasks such as putting on shoes. The eldest, 67 years old, is in a wheelchair. She bathes and dresses them, combs their hair and brushes their teeth. Sleeping with a baby monitor in her room, she gets up when they stir during the night. In the summer, they go to the park to feed the ducks and on week-long trips to the beach. The 16 hours at Clayton House leave her little time to be with her own sons, Akeem, 13, and Brandon, 11, which is harder on all of them since her husband died three years ago.

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In 2002, Ms. Ahmed received the Unsung Hero Award from her employer, the Arc Northern Chesapeake Region, a local chapter of a national nonprofit group that offers support to the developmentally disabled. The paper certificate sits framed in her bedroom, along with photos of her boys as toddlers, dressed in sailor suits. "To be honest, it's getting harder and harder," says the 48-year-old Ms. Ahmed. "It takes a toll on you after 17 years. I'm burning out." Over the years, lawmakers and courts have pledged that those with developmental disabilities should be free to live in communities, rather than institutions, and effectively left the task of fulfilling that pledge to people like Ms. Ahmed. Their efforts are paying off. Today, about 90% of the nation's 4.5 million developmentally disabled live in private homes, and many others live in small group homes, such as Clayton House. Eight states and the District of Columbia have closed every large, public institution for the developmentally disabled, moves lauded by advocates as not only more humane, but more cost-effective, too.

But obscured in the statistics are other figures that hint at a more fragile success. Faced with escalating demands and low pay, turnover among the more than 800,000 workers who provide direct care to the developmentally disabled averages 50% to 75% a year, according to Charlie Lakin, who heads a University of Minnesota program that tracks such services. Frequent turnover is especially difficult for the developmentally disabled, who often have the comprehension of a child and have, only through time, come to trust someone to care for them.


(snip)

Between 1992 and 2000, wages for "direct support" workers, who provide care to the developmentally disabled, increased 82 cents an hour. That compares to an average increase of $2.11 for fast-food workers, according to a study by consultants BDO Seidman LLP. The average starting wage for direct-support workers in the nonprofit private sector is $8.68 an hour. A 40-hour workweek at that rate yields an annual salary of $18,054, slightly below the $18,810 poverty level for a family of four.

(snip)

Moreover, about 700,000 people with developmental disabilities are now living at home with parents who are 60 years and older. Soon, they, too, will need help. The Bureau of Labor Statistics projects a 62% increase in demand for these kind of workers through 2010, more than twice the projected demand for nursing aides and fast-food workers. Those who work with the developmentally disabled inherited an unexpected legacy from a shift in thinking about care, says Timothy Quinn, executive director of the agency that employs Ms. Ahmed. Fresh out of college 30 years ago, he and other social workers were determined to get the developmentally disabled out of big institutions and into homes, with yards and their own rooms. "To sell it, we had to make sure we did it cheaper," Mr. Quinn says. At the time, he says, it was an effective strategy. But it inadvertently anchored the pay for all who followed. "They've never been able to make up what we gave away." The average annual cost for a person with disabilities to live in a home such as Clayton House is $67,000 a year, compared with $134,000 for a state-owned institution, according to the State of the States in Developmental Disabilities, a report compiled by the University of Colorado. Workers who care for the disabled in homes are, on average, paid 25% less than those who work in institutions, says Mr. Lakin, and don't receive the same benefits.

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Raising their pay is a politically charged issue. Wages and benefits already make up 60% to 70% of the budgets for agencies who provide services to help the disabled live in homes, the University of Colorado report says. Boosting them would require more Medicaid spending and likely force states to cut other programs or raise taxes. Legislation introduced to Congress in October would provide additional temporary funding to states to reimburse agencies for increasing wages. That bill is still pending.

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URL for this article:
http://online.wsj.com/article/0,,SB110306129834900053,00.html

Write to Clare Ansberry at [e-mail]

[Ilsa]

1. Thanks for posting this.

I'm the mother of a developmentally disabled child. He has autism, and life is already hard. Others need to know what is going on with disabled citizens and how much help they need.

[question everything]

2. I am sorry to hear about this

I cannot even imagine taking car of an autistic child.

Earlier this year, the WSJ had a similar, long story about a 50 year old (more or less) autistic child who was living at home with his 80 something years old father taking care of him

Then the father died and they had a story about how they were trying to find a home for him, a foster home with several young children but that it was going to be a temporary arrangement. At least then, the story seemed to have had happy ending and I had tears in my eyes while reading it. (In spite of what some post here, the WSJ, except for the editorial page, has an excellent team of investigative reporters who write very well).

I posted here because this is an issue that we, liberals, should be raising. This is where our tax money should be spend, not on giving tax breaks to rich people and to corporations who don't need them.

[Ilsa]

6. Thanks you. It wears us down.

This morning he was VERY hyper. My husband and I have to tag-team on him. We both have developed unspoken and intuitive signals to one another about helping each other out when it gets too difficult to handle and we are reaching our limit. It seems like on mornings when he is doing well, his little brother creates a scene (as in asking for ridiculous rituals, so it's likely we have one autistic, and one with some sort of brain anomaly.)

He takes alot of medication which allows him to perform decently in school, most of the time, but it isn't easy. Mainstreaming isn't working very well right now.

My husband and I need some time to ourselves to recharge our relationship, but right now the kids are too difficult to handle for his aging parents (and my family isn't an option). A person really has to know how to handle these kids to prevent further behavioral problems down the road.

I worry about the future for him and his brother as well, as I don't want one child to feel like he has a burden of the other when we are gone.

[SemperEadem]

3. and why aren't the pro-lifers up in arms about treatment of

developmentally disabled people? They were once fetuses, too...

It makes no sense that those who take care of them get less in wage increase than some teenager working the drive-through window at McDonalds.

[baba]

4. It is a travesty.

It is horrible how low people are paid in this profession. Social services wages are notoriously low. Believe it or not, many people with Master's degrees in this and related professions don't make much more than that.

[Cobalt Violet]

5. True

It's hard to pay your rent and bills with your nobility.