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Parents to Lawmakers: Where Will Our Children Live When We Die?

by Christine Stuart | Feb 7, 2014 1:24pm
(16) Comments | Commenting has expired
Posted to: Civil Liberties, Equality, Health Care, Housing, Jobs, Labor, Nonprofits

Christine Stuart photo

Left to right: Reps. Tony Hwang, Tim LeGeyt, Jay Case, Sen. Beth Bye, and Rep. John Hampton.

Joe Duffy is 70. He worries what will happen to his 30-year-old daughter, Kate, who has multiple developmental disabilities, when he dies.

“This is really a public health emergency, especially in the area of housing,” Duffy said.

He said they’ve been told their loved ones will stay at home with them until they die, but “we’re not going to be around forever.”

CTNJ file photo Duffy said there’s no transition policy in place and placement is usually done by emergency, which in many cases is the death of a parent or guardian. In any other context that would be considered “cruel and unusual punishment,” he said.

Leslie Simoes, executive director of The Arc Connecticut, said she knows families who have been on this emergency wait list for housing for eight to nine years. If someone isn’t suited to live in a group home and can remain mostly independent, then there aren’t any services for them provided by the state Department of Development Services.

She said the system is set up in such a way that it doesn’t meet individuals needs because it either offers a group home placement, or nothing. There are many individuals that don’t need that 24-hour custodial level of care.

But the problem is when these individuals, if they’re lucky enough to qualify for services through the state, only get “day service” money. There’s nothing to meet their residential needs and there are more than 2,000 people at the moment on the waiting list, Simoes said.

“We do not want to be regarded as a bargain-basement approach,” Duffy said. “Our people, we feel, are as informed as anyone else who needs a hand up. That’s why we’re all here today.”

Lisa Roland’s 19-year-old son has Down Syndrome and she is looking for meaningful employment and housing opportunities for him.

She said she’s looking for ways the state Department of Developmental Services can use its more than $1 billion budget effectively. She said her son is fairly independent and doesn’t need a group home or 24-hour care. She said she wants some of the money the state saves when it moves a person out of institutional care at Southbury Training School to be spent on services for individuals on the housing wait list.

Roland said she will need to start applying for services for her son when he turns 21. Until then he receives care through the educational system.

“We’re staring into the abyss,” Roland said. “And we’re scared.”

She said they’ve already decided to sell their West Hartford home and move closer to the center of town because there’s no transportation options where she lives and her son can’t drive, but he can use the bus.

Walter Glomb of Rockville said he has a 25-year-old son with Down Syndrome who, like Roland’s son, doesn’t need the 24-hour care that the legacy system provides in institutions and group homes.

Glomb said he’s part of a group of parents who frequently shares creative housing ideas for their loved ones and would be happy to share those thoughts with lawmakers.

“While the gears turn slowly at DDS and the legislature, the clock doesn’t stop for us,” Glomb said.

The legislature approved a $30 million reduction in the Department of Developmental Services budget last year and Gov. Dannel P. Malloy did not propose restoring it this year, but parents who attended the public hearing Friday were not fazed.

Simoes said these parents are in this fight for the long haul and the formation of the Intellectual and Developmental Disability Caucus was just the first step in getting policymakers to understand what they need to do in order to make a difference.

“It’s really a larger systemic issue than the $30 million cut,” Simoes said. “It’s a system that really needs to be overhauled.”

She said the governor has the ability to turn the funding system on its head by closing Southbury Training School and placing the 353 people who live there into group homes in the community. But families of those who live at Southbury are against moving their loved ones from a setting they’ve known for years. There are some who have even argued opening the sprawling campus to new admissions.

It costs the state more than $380,000 per person. Residential housing the community costs about $120,000 per person.

But Simoes said this isn’t about quick fixes. She said establishing the caucus and educating lawmakers is part of a long-term, five-year strategy.

“This is like trying to turn the Titanic,” Simoes said. “You can’t do that.”

The Department of Developmental Services said Friday that it’s working on re-balancing the system with the resources it has.

“For the last three years DDS had been actively engaged is systems change working to move our services away from costly models to person centered supports,” Joan Barnish, a spokeswoman for the agency said. “Connecticut DDS is recognized nationally as a leader in developing family and person centered supports.”

Sen. Beth Bye, D-West Hartford, who co-chairs the newly formed caucus, said she was impressed with the turnout Friday and believes steps can be taken this year to help families.

She said this governor understands supportive housing better than previous ones and she’s confident something can be done to turn the current system around.

“It made me look at the budget a little differently,” Bye said.

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(16) Comments

posted by: Fisherman | February 7, 2014  7:01pm

Most folks don’t realize it yet (they soon will); but Medicaid is a welfare program where the government (which advances folks the money when they get sick or need health care) is first in line to get paid back. If you have no money when you die; they take the house and sell it at auction.  It really IS that simple.

posted by: dano860 | February 8, 2014  8:01am

The people I know in this position have established trust funds for their children. Many of them have passed and the children are being cared for.
Do they offer an insurance, like long term care for the elderly, for people in this position?
The State shouldn’t be the future care takers for these people.

posted by: Insboy | February 8, 2014  10:39am

@dano860: “The people I know in this position have established trust funds for their children.”

Sounds like you need to get out and meet some other people.

posted by: 17beachboy | February 8, 2014  1:05pm

I know I am going to upset many with this post - but here goes.  This is what happens when you have a state government (both parties) more worried about getting re-elected than doing what is right.  We should cut back the welfare program for those able bodied recipients that refuse to better themselves and apply the saved funds to help care for those who are developmentally challenged.  Many of the developmentally challenged that live with their parents try to better themselves (ex: many work).  Seems to me they should get more of a helping hand than the welfare recipients who are content living off the taxpayers dime generation after generation.  However - the politicians are more focused on making this a welfare state and thus “buying” votes by way of handouts.  Now - I acknowledge that not every welfare recipient is abusing the system - many are truly in need of a helping hand.  But let’s be honest-a large number of welfare recipients are abusing the system and are not ashamed to do so.

posted by: user555 | February 8, 2014  2:36pm

When people moved to “community” as they said in the article - WHO is caring for people with disabilities? Community is often not trained to care for the disable and they could be misunderstood.How do you establish transparency. Quality of care could be lacking and it would be very hard to check what is going on day to day basis in that home where disabled person is placed. They have no voice to tell someone how they will be treated there? How do you make sure the down syndrome woman is not molested or elderly man with DS taken to his primary care physician when he is not feeling well or dehydrated? In a group home settings there are shift in people schedules and one is checking on another but in “community” settings they placed in someone’s home such as “foster"home. This could be scary. They cutting DDS money (Maloy) and cutting the services from those
who can’t stand up for themselves.

posted by: djking | February 9, 2014  8:24am

We don’t know anyone with a trust fund, and as custodial GRANDparents of a 23-year old young man with DD, we don’t have the time or finances for a trust fund.  What kind of society do we want to live in?  People are not “throw away” commodities.  WE are the government and the government (State of CT) has a moral responsibility to help.  There are 3500 people on the “wait list”.  Closing Southbury is not a solution.  To some people, that is their home.  People with ID/ DD are contributing members of society on all levels.  They teach us patience, empathy, how to care for each other and they teach our children tolerance and inclusion.  Many have jobs and will contribute financially Connecticut has the resources to fund residential supports.  Throwing billions at UCONN and building busways to nowhere may look good politically, but this kind of politics will not work for anyone in the long run.  This is not a Democratic or a Republican issue.  This is a human issue.

posted by: Lawrence | February 9, 2014  9:09am

Dear Dano860,

How’s the atmosphere on that planet you live on in outer space?

Send us another radio transmission real soon!

We miss you.

Love,

Humanity

posted by: dano860 | February 9, 2014  8:20pm

Insboy, I have, in the past week, volunteered over 15 hours plus donated over $300, with our local agency that serves the under served. I have done another 5 hours with our local ARC office and drove two special needs people to their jobs. My children and I have volunteered for the Special Olympics through UTC for the past 23 years. We have photo’s of us with Mrs. Shriver when she attended the games at Yale. I believe I know a few people.
Lawrence, once again, your attempts to belittle someone have done nothing to advance the issue. My question was simple, can they get long term care insurance? The wife and I have it.
I will keep an eye out for you, from my planet, as you fall off that narrow ledge you prance upon.
While this is a ‘human’ issue I believe, as many do, that the care and advancement for these folks lies in the hands of faith based groups with voluntary funding from the community.
I understand the fiscal constraints and personal burdens a family must endure but good help and planning is available. Many of the clients I know do work and most receive aid from the State or Feds.
I have spoken to the parents about their earnings and they tell me they also get SSI and SNAP, some receive SSDI also.

posted by: djking | February 10, 2014  12:14pm

I guess my question is, if we rely on the “faith-based” community for our grandson’s supported living needs, who’s going to go begging for
this money after we’re too old to do it or after we’re dead?  I know our church
doesn’t have enough money to do this.  As for SSI and SS, that’s been cut back also.  Our grandson gets about $450/month combined from this and he cannot have assets over S2000.  (bank account)  I am a retired RN.  My husband is also retired.  There is no extra money for supported living.  Insurance for long term care is financially out of the equation for us, never mind our grandson.  Sorry, but good help and planning was not available while we were busy working and bringing up 3 grandchildren.  We were assured by DDS that when our grandson turned 21, there would be placement for him.  Instead we were shoved off the cliff.  “Creative Housing” means.  Don’t call us, we’ll call you

posted by: Joebigjoe | February 10, 2014  2:39pm

What about requiring people to have term life insurance policies that are inexpensive and will tax free cover the needs of some of the years of treatment?

posted by: user555 | February 11, 2014  6:50am

Joebigjoe, life insurance for parents of autistic children? To cover for their treatment? Do you suggest they should die early to pay for the years of treatment for their children??? Obviously, if they live to their 80s, they won’t be able to pay for their life insurance, right? Because term life insurance in 80-s is not affordable for average American. Term life insurance for people in 80 just enough to cover for their funerals. My guess you never researched the life insurance.

posted by: Joebigjoe | February 11, 2014  8:22am

User, trust me I know life insurance. My comment was sloppy as I was in a hurry.

I should have said life insurance up to 65 so they handle some of the risk. Buying a twenty year term at 45 is not expensive. I understand after that age that term life is cost prohibitive for many. I didnt mention whole life but I assume that if someone had whole life that they would have their childs care be taken care of as a beneficiary for at least a short time.

What I am trying to say is that the care shouldnt be put ALL on tax payers but that the parents should be trying to cover some of the costs. If your concern is dying you get life insurance. My concern is dying, so I own it and although only time will tell if its enough, it would never cross my mind that taking care of my spouse and children is someone elses responsibility.

posted by: djking | February 11, 2014  1:03pm

A nation’s greatness is measured by how they treat its weakest members….Ghandi

This is not a one size fits all problem and there isn’t a one size fits all answer.  Some, like my grandson, have jobs and can contribute to supported living expenses and supervision staffing.  Others require round-the-clock care.  Does that mean my grandson has to wait for us to die in order for him to live life to his fullest ability? 

When our children go to college, most get grants and loans.  THAT’S taxpayer money.  The price for living in a civilized society is trying to make sure others are treated with dignity and respect, whatever that takes. Throwing money at UCONN to create an elite institution and creating busways no one needs is not using taxpayer money in a moral way.  Part of the problem is that lots of people don’t want to spend money unless there’s something in it for them.  I repeat…A nation’s greatness is measured by how they treat its weakest members…Ghandi

posted by: Joebigjoe | February 11, 2014  4:06pm

I guess I am not the only one mispeaking here today.

“When our children go to college, most get grants and loans. THAT’S taxpayer
money.”

Sorry, loans are not taxpayer money and I got neither loans nor grants to pay for my kids education.

As for the weakest members of society I have always said that if I ever ran for office (not happening) I would say we do far too much for people that can help themselves and not nearly enough for those that can’t.

The problem is that I think we can get consensus on those that can’t but the problem arises when every excuse under the sun is made for those that can.

posted by: user555 | February 11, 2014  7:53pm

Joebigjoe, 65 is not the average life of person lives. I do have life insurance but I hope I live longer than that. I have to be a millionaire to pay my life insurance in my 80s. I have a breakdown how much I would have to pay a months and that is a theoretical number not practical. Please look in how much life insurance for 80 something years old person cost to buy.

posted by: Joebigjoe | February 12, 2014  11:16am

User I know that. I didn’t fall off the turnip truck yesterday. Twenty years ago I was a licensed life/health agent so I know the business.

Other than saying that everyone who has a child should have life insurance regardless of the their age or the health of their children. I got out of the business when a prospect of mine was killed in a car crash leaving behind two young children and a wife with no more than the 1X salary he got from his employer. He wanted additional life insurance and his wife said no because they had just bought a new home and needed rugs, so I have very strong opinions on life insurance and being responsible.

As it relates to special needs children that will need state care after the parents are gone, I am saying that since anything can happen to those parents at any time, like my healthy early 30’s prospect, they should be required to have life insurance on their own lives up until around 65. Thats lower than their life expectancy of course but my argument is that if you know someone else will have to pay big dollars to care for your child that cannot care for themselves, why is it right to take 100% of that risk and put it on taxpayers?

Let’s say they have insurance and let’s say it becomes cost prohibitive at 65 and the parents die at 67. They tried to carry the risk for years and then it became cost prohibitive. They did their part. I am more than willing to have my tax dollars go towards the care of their child after that. If they didnt have insurance and died at 50 I don’t think that’s right as it puts 100% of the cost on taxpayers. Their insurance if they had it and died at 50 may only carry a couple of years of care, but again after that I am willing to contribute as they didnt leave other people carrying 100% of that risk.

Do you understand now?