NEW HAVEN >> Morgan Kelly is not even 30 years old, but already she and her boyfriend have been the caregivers for his mother for 10 years with no government help.

Kelly, a nurse, was one of several people who advocated for changes in the system that would broaden help for people such as her good friend who was diagnosed with early onset Alzheimer’s disease when she was 49 and did not qualify for Medicare or Medicaid.

“Disease doesn’t have an age restriction...,” Kelly said.

She was one of several people who presented problems Monday on caring for the growing population of elderly and what that means for caregivers,

Advertisement
They were invited to the South Central Agency on Agency at Long Wharf by U.S. Sen. Chris Murphy, D-Conn.

Murphy said in Connecticut nearly one in six adults is providing care for an elderly relative and 75 percent of adults expect at some point in their lives that they will be providing this kind of care.

The senator counted himself among those.

“We thought we had built a system that involved guaranteed care provided by the community and the government for individuals above the age of 65 such that you wouldn’t require that much intervention by younger family members,” Murphy said.

Nationally the amount of uncompensated care provided by relatives is $470 billion a year, larger than the revenues of Apple, Microsoft, Hewlit-Packward and IBM combined, he said.

Murphy said the problem is only going to get worse in Connecticut, which already has the 7th highest population of elderly; by 2040 the number of residents over the age of 65 is going to grow by 60 percent.

One federal initiative would bring all the relevant agencies together to acknowledge the problem at the federal level, something Murphy is backing.

The senator said the economic fallout impacts women the most as they are the ones who are likely to leave a job and lose Social Security contributions in their prime earning years. This negatively impacts their ability to support themselves when they are older.

“If you are engaged in full-time or part-time care of a loved one, you should get credit for that time for your ultimate Social Security benefit. You shouldn’t be punished when you retire for taking care of your relative when you were younger,” Murphy said.

He also favors more flexible work schedules to help these families.

Murphy said the role of the family has increased because they can’t get the right level of care matched with needs of an elderly relative.

“We have to have a dramatic reform of the Medicaid system,” he said.

It doesn’t kick in now until you have exhausted all of your income and then it only covers a nursing home unless you are in a state that gets a waiver to cover other things, such as homecare, which Connecticut has done.

“But it is still the exception to the rule,” Murphy said of the majority of states.

He said flexibility would allow you to spend the money earlier for homecare, wellcare or assisted living before a nursing home.

The last big problem is affordable senior housing, which hasn’t been built in this country for about a generation.

Murphy said he is not saying families shouldn’t help take care of their relatives, but right now the system on how we pay for care and regulate care makes it harder to do.

He said America is already an outlier given the lack of interdependence among generations, unlike some Asian and European societies.

A volunteer for the American Association of Retired Persons said caregivers people hire do not get paid enough for such a stressful job.

Murphy said paying them what they are worth would lead to less turnover.

“Homecare is the right thing ... but we are really not serious about it right now because we are so badly underfunding (it,)” he said.

The senator said if the country doubled up on the money we are spending on homecare, he predicted you would save that money within five years.

“It is just one of these big bets that we should place because it will pay off,” Murphy said.

An attorney who specializes in elder attorney said zoning rules are a problem for families who want to add an in-law apartment on their property.

An argument was also made to pay a spouse or child who is taking care of a parent and not count them out under Medicaid.

Murphy said the worry is oversight, but with technological innovations it should be easier to show accountability in these family situations.

Edward Fitzgerald, who took care of his wife, who had Alzheimer’s, for three years, said he found friends and relatives drift away after awhile. He said there should be an educational effort to tell people how assisting with errands and checking in is important to caregivers.

“It’s the little things that help,” Fitzgerald said.

Fitzgerald also advised caregivers to get involved with support groups as something that was especially helpful to him.

Connie Royster, who took care of her elderly mother, along with her sister, said paperwork involved in getting services was unnecessarily complicated, and while as an attorney she was able to handle it, others can’t.

She said this comes from a lack of trust in the individual and “that’s a bad place to start.” Murphy agreed.

To end that, the senator said that “involves a deal with the American public. We are going to move from a world of distrust to a world of trust, but then you are going to forgive your government when it occasionally delivers benefits to people who took advantage of that trust ... you could make a really good argument that we would be much better off if you made that deal.”

He said the complicated rules are put in place by bureaucrats and politicians who are afraid of a blowback if mistakes are made “by the small minority of people who may game the system, clouding the legitimacy of the whole program.”

Another participant said eligibility should be like the HUSKY program, where it is renewed automatically unless there is an income change. There was also concern that there is no money for transportation.

Peaches Quinn, who is with the Connecticut Coalition on Aging, said insurance and entitlement programs should be designed to recognize different phases of people’s lives from wellness to chronic illness to acute care.

She said we don’t have insurance to pick and chose what you are going to need, including homecare services, which leaves the system fragmented.

Quinn also said the state should bring back a coordinated volunteer system to help caregivers.

“It’s kind of like a Job Corps of senior volunteers,” she said and would go a long way to bring resources together.