Susan's Blog

Thursday, August 28, 2014

Our Journey Into Shared Living

Here is an essay I wrote for our service provider’s newsletter, about Shared Living for Nat. Enjoy!

Wednesday, August 27, 2014

New Development for Disabled Housing Mortgages!

Valuable home-purchasing information for anyone in the country with a developmental disability looking for a possible low percentage down mortgage. I received this information from Austin Texas Real Estate Agency. It may now be possible for parents to buy with very little down through Fannie Mae if the property is for a son or daughter with a developmental disability!

How to get a 5% down mortgage from Fannie Mae if you are buying a property for a son or daughter with a developmental or physical disability:

  • A parent (or parents) who is a natural person (i.e., not an LLC, or a co-op) can get a Fannie Mae loan for 5% down, and there is no cap on the parent’s income. Second mortgage is also possible but with a higher monthly payment.
  • Fannie Mae considers it to be owner-occupied by the parent who does not live there, if the child is unable to work or doesn’t have enough income.
  • The parent is still allowed to have their own primary residence.
  • You may collect income from residents, but this income cannot be used for the mortgage qualification.
  • You will need to check with an accountant to determine whether the mortgage interest is tax deductible. It is quite possible that the IRS will consider it an investment property (i.e., the mortgage interest wouldn’t be deductible).

The key language is in the Fannie Mae selling guide.

In research they conducted, it is noted that if a property is used as a group home, and a natural-person individual occupies the property as a principal residence or as a second home, Fannie Mae’s terms and conditions for such occupancy status as provided will be applicable.
Also please note, this is different from the Fannie Mae HomeChoice program, in which the individual with a disability is the owner of the property, and the family member is a non-occupying co-borrower. In this case, the family owns the house. This *should* allow the person with a disability to use a Sec. 8 voucher, provided the local housing authority permits the family to be the landlord as a reasonable accommodation. This is not true of HomeChoice, which doesn’t permit the use of a Sec. 8 rental voucher.

This is a very exciting discovery.
Also we advise you to start use Imbrex for more fair data about real estate market.

As always, neither I, nor Cathy Boyle, nor Autism Housing Pathways, is engaged in providing financial or legal advice. Always double check everything with your own financial and legal advisers. A full legal disclaimer is available at the Autism Housing Pathways website.


Tuesday, August 26, 2014

Thinking About Autism Housing?

Another great resource for Massachusetts autism adult housing: Housing 101 Workshops you can set up for your own organization. Autism Housing Pathways will bring their workshop to you!

Autism Housing Pathways* has now developed “Thinking about housing” to be “Housing 101” for families. This free 2 hour presentation introduces families to the range of public funds available to pay for housing and supportive services (including for those without DDS supports). Some examples are given of how these can be combined with private funds to create housing. The presentation also introduces a checklist of things to do when your family member turns 18.

Their current schedule of presentations is:

Oct. 6, 2014 at 6:30 PM at Community Resources for People with Autism, 116 Pleasant St., Suite 366, Easthampton (RSVP to
Oct. 7, 2014 at 6:30 PM at 7 Hills Family Services, 128 Main St., Sturbridge (RSVP by calling 7 Hills Family Services, 508-796-1952)
Nov. 5, 2014 at 6:30 PM at BAMSI, 155 Webster St., Unit D, Hanover (RSVP to Mary Ann Mills-Lassiter at 781-878-4074 ext. 11, or
Dec. 16, 2014 at 7:00 PM at Cary Memorial Library, 1874 Mass. Ave., Lexington (sponsored by Lexington SEPAC; RSVP to Barbara White,
Dec. 17, 2014 at 7:00 PM at Morse Institute Library, 14 East Central Street, lower level, Natick (sponsored by the Autism Alliance of Metro West; RSVP to
At least 5 more presentations will be added during the school year. If your organization wishes to host a presentation, please contact Cathy Boyle,

*Autism Housing Pathways is a non-profit that my friend Cathy Boyle developed here in Massachusetts. AHP’s core values are as follow:

Autism Housing Pathways (AHP) is a family-driven, membership-based organization serving individuals and families in Massachusetts impacted by autism and other developmental disabilities. We have the following core goals:

  • Building the capacity of families to find or create housing solutions for their family members with disabilities;
  • Improve the professional development of direct support staff;
  • Conduct research on the housing needs and resources of the Massachusetts autism community
  • Building the capacity of the housing sector to meet the residential needs of individuals with autism

Massachusetts Families: Terrific Opportunity

If you are a  Massachusetts resident living with a developmental disability, or if you are a Massachusetts family with a loved one with this diagnosis, pay heed! Especially if you are unlikely to qualify for a Priority One from the Department of Developmental Services at age 22. Priority One is for the most severe cases. Priority One is residential funding — home and staff. Most people in the DDS system do not qualify.

My favorite nonprofit in the entire world, Autism Housing Pathways has received a grant from the Mass. Developmental Disabilities Council. As part of the grant, Autism Housing Pathways will take a cohort of 12 individuals and families through a process that will enable them to identify housing options suited to their available supports, finances, and interests. They are currently seeking individuals and families to participate. There is no cost to participate. The preferred audience for this process are those not likely to qualify for residential services through the Dept. of Developmental Services at age 22.

What You Will Have to Do As a Participant:
1) Families will participate in a day-long housing workshop, to be held in Framingham, MA on Nov. 8th. Topics covered will include public funding streams, applying for benefits, asset development, calculating what the family can afford, possible ownership models, financing options, location, design, construction, and service providers.

2) Individuals will complete a workbook (either independently or with assistance from a trusted individual) touching on preferred activities, lifestyle and location, and being a good neighbor. The workbook will be available in three formats: one written at an 8th grade reading level; one written at an early elementary reading level; and one comprised of picture-based social stories and sticker activities.

3) Upon completion of the workshop and workbook, individuals and their families will engage in a person-centered planning process, using the PATH tool. While the primary focus will be to develop a housing vision, it will be necessary to include other parts of the personal vision to assure compatibility between housing goals and other personal goals. Each plan will include a pre-meeting with the individual and/or his/her family, as appropriate, to determine whom the individual would like present when the plan is created, and to help the individual begin to reflect on his or her vision; the main meeting, where the individual and those he or she has invited create the plan; and a follow-up meeting a few months later to check in on how things are going in implementing the plan. Person-centered planning meetings will be scheduled at the convenience of the individual and his/her family, but must take place before June 20, 2015.

4) 6 months after completion of the day-long workshop, a questionnaire will be sent to individuals and/or families to determine if a Sec. 8 voucher application has been completed, what benefits have been applied for, whether an asset development strategy has been adopted, and whether their living situation has changed.

Individuals and families MUST commit to the entire process in order to participate in any of it, including the day-long workshop and the workbook. Participants will be selected on a first-come, first-served basis.

Please contact Cathy Boyle,, 617-893-8217, if interested.

Saturday, August 2, 2014

How Does He Know?

Life is not a bowl of cherries, but you might be able to get a lot out of a bowl of strawberries. I’m sure you don’t know what I mean, but you will.

I am a writer, a word person, and an idea person, so I am obsessed with the way people say things and know things. Also, I am a mother deeply connected to my sons; put it all together and I am fascinated with what they know and how they express it. They are all three young men by now and so I have the added challenge of trying to figure out what’s going on with them while not seeing them all the time.

Most of the time I write about Nat, because it feels like Max and Ben, who are typically developing, are much more in need of boundaries and privacy.  Nat, who has intense autism, inhabits a different kind of territory, and appears not to be aware of what I am writing about him. I may be dead wrong about this stuff, however. Sometimes I explain to him about a book I’ve written or a television or radio program I’ve been on because of him, but I am not sure how to talk about with him in a meaningful way to him. I say stuff like, “Mommy is talking on the radio about you, Nat, because you have autism and you’ve learned so many great things so other people with autism want to hear about it. Like how you talk sometimes, and how you do Facebook, and how well you ride your bike. Or how you work at Shaws. A lot of people with autism can’t do that. So people want to hear about you. It’s because you do a good job,” I say, rounding it out, distilling the message in case I’ve said too much.

The questions I often ask are what does Nat know, what does he understand of the things going on around him? But today I was thinking, “Why now, and not then?” By this I mean, why is he showing understanding of that right now, but not all those other times? What happens in his mind that makes these circuits switch on? The people that believe in Applied Behavioral Analysis — and I believe in pieces of it, which in itself might nullify ABA which is an entire system, a stack of concepts and trials layered intricately one upon the other, built in a particular order so that if you work on only this part or that, you end up pulling out blocks as if in a big Jenga tower — the ABA-ists would say that Nat knows because of the repetition over the years. But I am not so sure. I of the Rube Goldberg-type junkyard mind, like to pick from this and that, the scrap heaps of ideas and creations, and find pretty things I can use in some way or another.

My mind works in great loops, with trains of thought broken, derailed, and then reuniting at the very end of the line. So how does Nat’s mind work? In the distant past I have imagined a radio with static, an impossible place filled with distracting noise, where you try to listen to the song but you just know it’s going to get knocked out again in the next moment. So you not only have a fractured song, you also have the tension of waiting for the interruption.

Lately I’ve been seeing Nat’s mind as being more like mine, maybe the way mine works in therapy. I’ve been in therapy for a very long time, on and off, mostly on, and the way it works for me is I keep learning the same things over and over, but each time deeper and clearer. So I wonder if it’s that way for Nat, where rather than a staticky radio — which implies just kind of a jumble of stuff in his head — it’s more like spiraling tunnels through the earth, mines and mine shafts that collapse sometimes. But each time he comes back up to the surface, he knows more.

I was thinking of this today that led me to consider Nat’s learning process. This morning, I gave him a bowl of strawberries. When he was younger I sprinkled sugar over them because — why not? But later, I kind of stopped because if he could eat them without sugar, then why not? And he never asked for sugar unless I offered it, and well, I just kind of stopped offering it, figuring it was probably better without all that sugar.

So he was eating the strawberries and looking up at me ever few seconds. But I was busy with something so I ignored him. I didn’t mean to. Then suddenly he got up from his chair and stood in front of me at the counter. He bent towards the sugar bowl but then stood up straight again, looking at me. “What, Nat?” I asked, really not knowing what.

“Sugar, want sugar please!” (I think he said please.)

“Oh, wow, Nat, that’s great that you told me! Wow, great!” I said, dumping a pile of sugar on his strawberries.

So why now and not all these other years? What does he suddenly know, that he asked for something like that?

I sure as hell don’t know.