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19-21 Columbia Park

Haverhill, Massachusetts

Eagle Street residents.



Introduction: Housing for Autistic Adults

When her daughter was forced to give up her longtime paper route and attend a sheltered workshop, Anita Perkins realized she had to start looking at housing and care for her daughter in a radical new way. 

In 2004, Ms. Perkins took a leave of absence from her job as a newspaper reporter and started the nonprofit, Katydid Foundation, Inc.  She and a friend who had worked with her daughter at the last group home “bought this ramshackle house with a hole in the roof,” Ms. Perkins says. That house would eventually be renovated to create 19-21 Columbia Park, an initiative that includes three efficiency units of affordable housing for autistic adults on the first floor and four units for live-in staff on the second floor.  

The Columbia Park initiative was the recipient of a $400,000 grant and a $360,000 subsidized advance (with a $142,875 advance subsidy) from the Federal Home Loan Bank of Boston’s Affordable Housing Program through member Haverhill Bank.

In this AHP multimedia profile, tour Columbia Park, visit with a resident and caregiver, and learn about the growing need for affordable housing for autistic adults in Massachusetts. (Photo left: Anita Perkins and her daughter Katie at Columbia Park.)

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The Developer

Anita Perkins is founder and president of the Katydid Foundation in Newburyport, Massachusetts.

Katie was our third child. She seemed a little bit slow in development, but nothing out of the ordinary. Just a little bit slower than her brother and sister.

But we soon came to realize that something was developmentally wrong. No one really knew what it was. We didn’t have a lot of answers or know what to do about it. We went through a lot of years of hit or miss.

We didn’t know what autism was. It was a disorder without a name. A lot of what the experts later learned about it Katy had already taught us. That was a good template for everything that came later.

(Photo right: View of Columbia Park.)

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Autism is a word that many people are familiar with now but it wasn’t always that way. People couldn’t identify someone with autism until the movie Rain Man came out. And even then people thought of somebody who is really good with numbers and doesn’t like confusion. And that is one part of autism, but autism is a spectrum and there are different degrees of behaviors involving interaction with people and stimulation.

Autism is a neurological disorder. The number of people believed to be on the spectrum is always changing. Recently I think I heard that one in 93 people is born on the spectrum. These include people with Asperger’s syndrome who could probably complete a PhD and have a job but may still have difficulty with social interaction, noise, and confusion. Some people with the full force of autism are nonverbal, have difficulty making eye contact, and have tremendous behaviors.

That is autism in a nutshell. I don’t think there is a known cause for it. Some of the experts are saying it might be genetic. There’s a lot more knowledge about it today and how to deal with it in the schools than there was in the past.

 


(Photo right: Katie and Anita Perkins at Columbia Park.)

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People often ask: ‘Well how did you know what to do and what not to do?’ Well we knew from Katie. What we did either worked or didn’t. There are all kinds of behavior that you hear about with autistic people and a lot of them really progressed as Katie got older.

Katie became a residential student at different schools — some good some bad. My fear was always ― what is going to happen to her when she turned 22 ― the magic birthday for any kind of disabled child because at that age services are no longer mandatory.

A lot of parents don’t know what to do or where to go when their child reaches 22. If they keep them until they die there will be an emergency situation. My biggest fear was I didn’t want that to happen. I wanted it to be the right setting.

I had always been involved in Katie’s life and this was no different. When she turned 22 we had difficulty even finding her a group home. Because of her behavior she needed a lot of staff to keep her safe.

She didn’t like to go out. It was a very taxing situation. Not surprisingly, her first year in the group home was very bad. We learned there were things going on that just had to stop.


(Photo right: Anita Perkins and live-in caregiver Sara Pilco.)

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So we placed her in a second group home here in Haverhill, near where I worked and lived. That way I could be closer to her and monitor the situation.

After a couple of years in that group home she started to do a paper route. It was something that got her out in the community. It was a surprising success. She learned to go to houses and perform a service. She never missed a day. Once she broke her ankle and her ankle was in a cast. We were going to take her home but she said, no, she wanted to keep doing the paper route.

Katie learned to communicate to her customers and follow directions. All the things therapists had tried to get her to do for years without success she was now doing. And as that happened other good things began to happen. She was starting to lose the extra 100 pounds that she had gained in the group home from eating too much ― they would just feed her because there was nothing else for her to do. She was in great physical condition, which we thought was amazing. This was really a miracle.

But at that point the administrators of the group home decided she was too labor intensive. They cut out the paper route and had her go to a day program because that was what everyone else did.  

(Photo right: Anita Perkins and Katie.)

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I was devastated.  To make a long story short, she went to the day program and ran away. Fortunately, she didn’t get hurt out on the street.

But we also learned a lesson from that; we learned that we had to go back to doing what works best for Katie. Once again everything fell apart in the group home and I was left in an emergency situation. Where are we going to send Katy next?

It required too much staffing for me to take her home with me so I thought the next best thing was to find a house and create a home for her. Looking back on this now I realize I didn’t have a lot of plans. I took a leave of absence from my job and thought I would be back in a month or two. I thought I might be able to rent an apartment. We would also need staffing, but having staffing for just one person is very costly.

In April 2004 I decided to start a nonprofit foundation called the Katydid Foundation. I and a friend who had been working with Katie at the group home bought this ramshackle house with a hole in the roof. We decided to find a way to make this work.

(Photo right: Caregiver Rosanny Pereyro, Anita Perkins, and Katie at Columbia Park.)

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We had someone move into the house as the house manager, but the long-term goal was for the foundation to own the house and fully renovate it so we could have staff living there. We also wanted to have two other young women with autism move in. It was a journey that would take us another six years.

At that point we were writing grants without really knowing what direction to go in. We thought we had a fabulous program but we needed to renovate the house to make it work. This was where the Federal Home Loan Bank of Boston came in. We were so fortunate to receive a grant from the Bank’s Affordable Housing Program. The house we were living in was pretty much demolished to create Columbia Park, which has seven efficiency units ― three for women on the autism spectrum and the rest for the live-in staff.

Looking back it almost looks like we had this tremendous plan, but I didn’t know about it until we were completing it.

There are a lot of people to thank for this. Most of our staff has been with us for a long time. These are people who listen to families like me and believe in the clients and what they need to live a beautiful life. Unfortunately, that was something that didn’t happen in the group homes.

(Photo right: Columbia Park.)

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For example, I wanted Katie to be on a gluten-free diet but that wasn’t possible where she was at the time. But it is here. We found that a lot of her behaviors calmed down by adjusting something seemingly innocent as her diet.

In the group home she needed two staff around the clock and had to be restrained at times. We didn’t know the cause of her anxiety and pain. We have since found out that a lot of her problems were likely connected to cramping caused by the food she was eating as well as confusion over who would be coming to the house to take care of her.

Just imagine how the average person would feel if she was going to bed but didn’t know who would be staying overnight with her. It’s very scary. That was what was taking place. Now she knows who is coming in for the night and knows everybody who is working for her. It’s an exciting time for all of us.

I’ve found that behaviors can change for Katie and others with autism. Katie’s degree of autism has changed because we have adjusted the stimulation. We recognize what needs to happen for her to feel less stressed.

(Photo right: Caregiver Rosanny Pereyro, Anita Perkins, and Katie at Columbia Park.)

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The big thing is what will happen to autistic people at the end of their 22nd year ― where can they go?  Housing like the Columbia Park is incredible because it addresses that need.

Operating the House
When I bought the house with our house manager we knew we could only do this for a little while and that the foundation would have to raise its own money for this. We were fortunate that we were able to get money from the state Department of Developmental Services, which had paid for Katie in the group home and continued to pay for her program here.

At first Katie was here with a young man who also moved in from the group home and had some support from the state. But not everyone that suffers from autism is able to receive money from the state. This creates an issue. What are parents to do?

When we set up this program we decided that we could do this if we shared the expenses.
Once we received the AHP grant from the Federal Home Loan Bank of Boston and Haverhill Bank as well as some small additional grants, the house part was taken care of. The next step was to think about how we could cover the cost of operating it.

(Photo right: Columbia Park.)

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The plan was to have three females living on the first floor. The residents themselves cover most of our costs. In Katie’s case it’s a combination of Social Security and Social Security Income. Other residents rely strictly on SSI and Food Stamps and maybe help from their families.

We’re able to manage the house operationally and have a little bit of a cushion to handle any emergencies that come along because we’re not out to make a profit. Many people have donated time or money or equipment. The chairs we are sitting on came from a donation. Almost everything in the house has been donated. This is how we have approached the development of this house.

Everyone who lives here is low income ― even our live-in staff, who are able to live here in exchange for providing services for our residents.    

When I decided I had to have a place for Katie and others like her, I really didn’t know what to do. The house manager ― who is no longer here ― saw what Katie and others like her needed. She saw that we needed to do this right away and offered to buy this house with me until we could raise the money through a grant to buy it for the foundation.

(Photo right: Live-in caregiver Sara Pilco.)

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It was the scariest thing both of us ever did. This wasn’t something that was done in Massachusetts. You didn’t just start your own programs. Fortunately, it is becoming more acceptable and even seen as the premier way to go to help people on the autism spectrum achieve a really beautiful life that they maybe couldn’t have anywhere else. Each of those lives needs a different type of setting, and this is what we provide.

(Photo right: Columbia Park ribbon-cutting.)

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Video Tour

Take a video tour of Columbia Park with Anita Perkins, founder of the Katydid Foundation.

Video: Click on the Start link at the right to tour Columbia Park.

(Photo right: Anita Perkins and Katydid board member and nurse Mary Alice Lipman at Columbia Park.

 

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The Numbers: 19-21 Columbia Park

Sources  
Federal Home Loan Bank of Boston AHP Direct Subsidy
$400,000
Haverhill Bank Subsidized Advance
208,000
North Shore HOME Consortium
100,000
City of Haverhill HOME
30,000
Pomeroy Fund
2,500
Total Sources

$740,500


 

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Uses  
Acquisition
$377,000
Construction
290,533
Legal
6,700
Development fee
24,840
Other soft costs
41,427
Total Uses
$740,500

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The Residents

An interview with caregiver Rosanny Pereyro and Katie.

Video: Click on the Start link to the right to view the video. >>

 

(Photo right: Katie with caregiver Rosanny Pereyro at Columbia Park.)

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Special Design Features

Anita Perkins is founder and president of the Katydid Foundation in Newburyport, Massachusetts.

When we built this house we worked with the architect and designer to have as much noise diffusion as possible. A lot of soundproofing was installed in the house. Most people when they come in here can’t get over how quiet it is.

The type of lighting is also an issue. Certain types of lighting bother some people on the autism spectrum. So there are features of the building design that can make things easier for people with autism. We take this for granted. Most of us have had similar problems in a more limited way. Perhaps we have been in a crowd or a nightclub where there is a lot of noise.  A person with autism may have that intensity and sensitivity every day.

FHLB Boston Housing Profiles December 2012


(Photo right: Columbia Park.)

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View of Eagle Street housing.