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State’s most vulnerable residents left in limbo: Who cares for special needs adults when aging parents cannot? Often, a State decision dictates

By Susan Jennings and Ashley May, Daily Record/Sunday News

Suzanne Keim and her daughter, Sarah Keeney, have a typical mother-daughter relationship.

Suzanne hands her daughter a tissue if her nose is running, fusses with her hair and reminds her where she’s put misplaced items. When Sarah has to wake up early for something, Suzanne is her alarm clock.

They move through their days together with a practiced rhythm, like seasoned dance partners.

And as she has for the 36 years that Sarah has been alive, Suzanne always takes the lead.

Sarah was born with Down Syndrome. She has a part-time job, reads at a second-grade level and can handle simple chores, but she still needs help with basic life skills ­– everything from cooking to cleaning to managing finances – and can’t be left on her own for more than two hours at a time.

Suzanne is getting older – she’s 61 now. And the recent deaths of two friends have made her realize she needs to make a long-term plan for Sarah now.

Sarah’s father died in 1990, and though Suzanne has since remarried, she doesn’t feel her 72-year-old husband should be responsible for Sarah should Suzanne no longer be able to care for her. Nor does she think Sarah should go live with her brother and his wife, who have four children of their own with another one on the way.

I want her somewhere that she’s happy, she’s safe and she knows the people.

-SUZANNE KEIM, SARAH’S MOTHER

With limited resources, Suzanne looked to the state for help with Sarah’s care.

The state has money – $1.2 billion in the proposed 2016-2017 budget – to pay for anything from basic life skills training to 24-hour residential care for people like Sarah. When federal funding is added, that number is more than $2.6 billion. But, in Pennsylvania, that money doesn’t come close to covering everyone who needs it. In fact, thousands of people -– including Sarah -– are on the waiting list. And she’s been on it for 15 years.

There’s no plan to change a system that’s left some of the state’s most vulnerable residents in limbo.

If Suzanne were no longer able to help her daughter, and was not approved for some of that state money, Sarah could be institutionalized out of the county or even out of state.

That would mean “taking away everything that’s familiar to Sarah,” Suzanne said in October.

In August, Suzanne and Sarah were approached by Sandy Myers, executive director of operations at Jessica & Friends Community, a York Township-based agency for people with intellectual disabilities through which Sarah receives services.

Jessica & Friends was planning to open a new group home in Spring Garden Township, minutes from where Sarah and Suzanne lived in York Township. Two of Sarah’s best friends were ready to move in. Would Sarah want to be the third roommate?

Suzanne and Sarah were interested. There was just one problem: In order to secure her future, Sarah needed the state’s money. And the waiting list for that money included almost 14,000 other people.

The social cliff

From the time they are born, Pennsylvanians with intellectual disabilities have access to a variety of special education programs.

Waivers explained

What is it? The Medicaid Home and Community-Based (HCBS) waiver program was created more than 25 years ago to allow individuals with intellectual disabilities to receive services in their homes and communities rather than in an institution.

Why “waiver”? The term comes from an agreement between the state and federal governments to “waive” certain regulations under the medical assistance program. Waivers are allocated in slots rather than dollar amounts, based on the needs of the individual.

Who allots them? The state Department of Human Services, Office of Developmental Programs (ODP) allocates waiver slots, which are funded primarily by Medicaid, to each of the state’s 67 counties, based on need. The counties give them to individuals who are over age 3, require active treatment and are eligible for medical assistance.

Estimated number of people currently on the waiting list: 13,900

To work around the law, the federal government allows the state to “waive” Medicaid rules for institutional care so that people can get money toward services or living expenses in their communities instead. To get the money, you have to be approved for a waiver – and there are only so many given out each year.

In Sarah’s case, she had assistance to offset the costs of attending social events at Bell Socialization Services and the Arc of York County, as well as day programs at Jessica & Friends, which help her learn skills including meal preparation, personal care and housekeeping in addition to offering her job coaching.

More than 13,900 people statewide are on the waiting list, according to the Department of Health and Human Services. That number has been as high as 28,000. In York and Adams counties, there are 439 on the waiting list.

Sometimes, people can get services and support from their county. But approval by the state means they can get a full range of support. And money becomes available only when someone who is receiving money dies, moves out of state, doesn’t want or need it any more or the state expands the number of waiver slots.

The state doesn’t add slots in any predictable manner, and the slots don’t necessarily increase every year. And while more people get money each year, thousands are shut out.

Getting to work

It’s not the first time Sarah has attempted to get a place in a group home.

In 2003, she was close to moving into another group home being opened by Jessica & Friends when state regulations changed and prevented her from getting the spot.

“We were devastated,” Suzanne said. She and Sarah had bought pots and pans, sheets and towels and other items for the home. All of that had to be packed up and put in the attic.

But worries about Sarah’s future in York loomed.

“I want her somewhere that she’s happy, she’s safe and she knows the people,” Suzanne said.

Right now, Sarah’s life is full.

She works a couple days a week at the McDonald’s on Leader Heights; bowls with the Special Olympics; is a member of the Hosanna Ringers, Jessica & Friends’ handbell choir, and volunteers at a nursing home. She works out with her mom three days a week at Curves and goes to church every Sunday.

Everything she knows is in York.

So getting a second chance to move into a group home with two of her best friends, and just minutes from her mom, is exciting.

Types of waivers

Person / Family Directed Support waiver (P/FDS): Known as the “small” waiver, it can pay for up to $30,000 annually in services: day programs, job training, life skills training, therapy, transportation, respite care and adaptive equipment. These waivers are geared toward recent public school graduates who are living at home with family or who are living on their own in a home, but who need help with things such as budgeting and grocery shopping.

Consolidated Waiver: Known as the “big” waiver, it has no cap and can be used for any supports and services – help with personal care, chores, meal planning, errands, shopping, healthcare needs – that allow recipients to live on their own, in a group home or in a family home.

The waiting list

Individuals applying for waivers work with a county caseworker to complete a form that determines which waiting-list category they fit into. The categories indicate how urgent the current need for services is:

Planning: Two to five years.

Critical: Six months to two years.

Emergency: Now or within the next six months.

Myers said it’s important Sarah gets one of the state’s slots.“Group homes don’t open that often. The time is now,” she said.

In August, Sarah moved up from the critical list to the emergency list, the first step necessary to get the money she needed. But that didn’t guarantee she’d get it in time to move into the group home, which Jessica & Friends planned to open in January. Expansion of funding was on hold because of the lack of a state budget, and Sarah was still on the county’s long waiting list.

In order to improve Sarah’s chances, Myers advised that Suzanne make sure the right people knew Sarah’s name. So they started writing letters and making phone calls. To the governor, state senators and representatives, the county commissioners, the Department of Human Services and the Secretary of the state’s Office of Developmental Programs. Sarah wrote a letter and sent a picture of herself to York/Adams Mental Health – Intellectual and Developmental Disabilities (MH-IDD) Program Administrator Steve Warren, who decides who’s approved for a slot.

“He responded that he would do anything he could to help get her in that home,” Suzanne said.

By October, Suzanne and Myers were feeling more anxious about Sarah’s chances. They hear all the time that there’s no available slot, Myers said.

Suzanne and Sarah continued to wait. And worry.

Changing the system

State Rep. Thomas Murt, R-Montgomery and Philadelphia, said the state needs to do a better job of caring for those with special needs.

“This mission is undervalued,” Murt said. “Many people say they do care about adults with special needs and I believe them, but at the end of the day, we need to make a more significant investment in this mission.”

How the county determines who gets help

Waiver slots become available when the state expands the waiver program and/or someone who holds a waiver dies, moves out of state or, for whatever reason, no longer wants the slot.

When a slot opens, York/Adams Mental Health – Intellectual and Developmental Disabilities (MH-IDD) Program Administrator Steve Warren and his team in the York County Human Services Center decide who will receive it.

First, human services staffers meet to discuss who on the waiting list has the most immediate need.

Next, supervisors and program specialists meet to review the staffers’ list and make a recommendation to Warren, who makes the final decision.

The length of time someone has been on the waiting list matters, said Warren, but it’s far and away not the deciding factor. The process is fluid, Warren said.

“I’ve been the administrator for 32 years. It’s never easy,” he added.

Does writing letters and making phone calls on behalf of an individual improve their chances of getting a waiver?

Warren said that with more than 150 people on the emergency list alone, it helps from the standpoint of name recognition. He encourages families of those with intellectual disabilities to reach out to their state representatives and advocate for the state to put more money toward the waiver program.

Murt has proposed or backed several pieces of legislation to raise more money: a tax on table games, casino admission fee of $2, 3.2 percent extraction tax on natural gas, .05 percent tax on insurance policy premiums, personal income tax form check-off for voluntary funding, cigarette tax, smokeless tobacco and waste disposal fee.

Nothing has passed. Murt said the biggest challenge is education.

“If you do not have a family member who is an adult with special needs, maybe you aren’t as knowledgeable about this issue as you should be,” Murt said.

In November 2014, the Department of Public Welfare was renamed the Department of Human Services. That name change was made to help more people understand there’s no shame seeking and receiving human services help. It also helps to identify the mission of the department.

Another challenge is simply raising money for this program.

State Rep. Kevin Schreiber, D-York, who attended an informational meeting for families at Jessica & Friends back in October, said the government should ensure individuals get the care they need to be independent. But, that comes with a big price tag.

“An individual that needs 24/7 care is costly,” Schreiber said. “I think the No. 1 issue is how do we continue to pay for this? And, how do we do it in an efficient way?”

It’s improbable that everyone on the list can receive funding.

The average cost of people who got a big waiver — which has no cap on the money given out — was $112,628 in 2014-2015, according to the Department of Human Services. Comparatively, it costs $312,700 a year for someone in an institution.

In Pennsylvania right now, Tesler said more than 56,000 people get services in home and community-based programs, compared with 3,500 people living in state and private institutions.

Every family that is able to keep family members at home rather than in an institution saves the state hundreds of thousands of dollars annually and millions of dollars over a lifetime, she said.

“In a perfect world, people would not have to wait for services. That’s ultimately the long-term goal,” Tesler said.

Good news

Dec. 3 was a busy day for Sarah and Suzanne. They attended the annual holiday party at Jessica & Friends and went Christmas shopping afterward. When they got home at 5:30 that night, Suzanne’s husband told her the phone had been ringing a lot. Another one of the mothers whose daughter was planning to move into the group home had called. Then Sarah’s supports coordinator. And finally Myers.

Suzanne knew these three women calling in such a short span of time could only mean one thing.

After more than a decade on the waiting list and months of phone calls and letter-writing, Sarah was going to receive state money that would allow her to move into the group home.

“It was my Christmas present,” Sarah said.

While Sarah said she’d miss her parents and her dog, Lizzy, she was ecstatic about moving in with her friends.

But Suzanne’s own feelings were mixed. If Sarah did not have Down Syndrome, she knows her daughter would be out in the community, probably married with kids of her own. And as a parent, she wanted her daughter to have the same social opportunities as everyone else. It was time for Sarah to have more independence.

Still, for the past 36 years her daughter has been her life. Suzanne can’t quite picture what life without her will look like.

Does she have any hobbies?

“Hobby?” she replied. “My hobby is my daughter. She defines me.”

Move-in day

The last Saturday in February was move-in day at Jessica & Friends’ new group home in Spring Garden Township.

The mood was not unlike drop-off day for college freshmen – a mixed bag of excitement, anxiety and sadness.

Sarah’s initial excitement about moving in with her friends had dissipated.

She was quiet, less quick to smile. But her enthusiasm returned when her roommates – 39-year-old Jayme Janora and 49-year-old Kim Grove – arrived.

The three, who have known each other for years, gathered on one of the donated living room couches, chatting and giggling, arms wrapped around one another.

“She’s my best friend,” Janora said about Sarah. “Her and Kimmy are like my sisters now.”

The girls had been waiting years for this moment. They’re the lucky ones from a long list of Pennsylvanians hoping they’ll be next up to receive the services they need to stay close to home.

Right now, there’s no real plan to end that wait. It’s too costly and not high enough on the priority list.

The mothers seemed reluctant to leave their daughters in their new home, even as Jayme, Kimmy and Sarah enjoyed a seemingly never-ending cycle of chatter, laughter and hugs.

They continued to organize their daughters’ rooms and review meals and medications with the house manager.

By the time the pizza arrived at dinnertime, the mothers were starting to leave.

This happy ending was bittersweet.

Sarah’s, Jayme’s and Kimmy’s futures are secure.

Three down. 13,933 to go.

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