welcome to another episode of caring for those caring for selves produced by the massachusetts lifespan rest the coalition i'm your host tonight stacey hammarlund i'm the project coordinator and i'm incredibly excited to have this amazing panel of people here who have developed programming my thought is this is a group of people who thought there was a gap in the system and made did some action do something about it terrible grammar there but let's go around and introduce  kathy boyle and i'm the president of autism housing pathways and we work with families to figure out housing options for their family members with developmental disabilities and their mcdonald's my name is mary mcdonald i am the  o of merrimack missions which whose goal is to really save the lives of dimentia caregivers and at my home in topsfield we are developing wheelchair accessible gardens because my husband and i saw a gap that there are just are not many accessible gardens in our state and patent my name is pat lawrence i am in the throes of mental health matters for the past twenty five years and there was a large gap in the system fifteen years of for the mentally ill and they only got five hundred dollars in insurance so i wrote the mental health parity bill which took the atmosphere sights sounds and different types of textures waiting for things people with autism especially kids can have a very difficult time doing that they don't like to wait it can become overwhelmed very easily distracted very easily and what might be something as simple as is going out for a bite to eat to a restaurant for dinner one evening presents many challenges the kids don't want to sit still  might have a limited palate have nothing to eat on the menu they might throw tantrums or rack loudly and it becomes very stressful and you might feel like you're impacting the diners around you the well meaning restaurant staff typically doesn't know the best way to help to assist to work with your table and you know after experience this time after time it becomes more stress moorings idea than it's really worth and what that does really is it causes you to stay home and not go out into the community as much as you'd like to do and you get a sense someone of beisel a shit which doesn't feel good so what what my wife  ny did was to start this group start autism eats and put together restaurant dinners for families that have a member or members with autism to come out in a completely welcoming opening environment not judge mental everything that restaurant is set up for success in terms of accessibility terms of the menu terms of not having to wait we have our own room and it's just a chance for us to get together build community the concept of power cafe came out of as we talked about earlier seeing a gaffe the gap and i saw is that children with disabilities have a lot of resources these days in the schools and in hospitals but when they are the grow up in the system kind of drops them and says have a have a good day and there's huge unemployment among people in disability and i think that's a really a missed opportunity we might not have to employ these and they're both really great it was just a matter of figuring out what the what the combination of each one of them needed in order to really  about that later that's really exciting and kathy from autism housing pathways yes now your group started after your group started from a group of parents in two thousand and nine we started out as a group that was exploring the idea of creating a house for our kids who were going to age out of a specific school that they went to and we did research we had a vision in process we had talking heads come in and at the end of about six months what we found out was that to even open one house we were going to need a lot more people because  if you get a group of fifteen people together to try to put together for your house well these kids are non verbal these kids are very verbal this family doesn't want to be used to four ninety five this one doesn't want to be south of the pike you know so even though we had a huge amount in common we needed to go bigger to get anything done and in the process what we concluded was maybe what was really needed was an umbrella group to do the research  because no matter how many houses you create everybody has to do the same research because everybody is bound by all of the program matic regulations of all of the state and federal and local regulations and so that's what we did we became an umbrella organization to figure out what the housing options were and educate people about those options because one of the biggest problems that families get into is they think oh i'm going to do wop law and they sink a whole lot of money into it and it doesn't work either because they were counting on a funding stream that they didn't know about a regulation that prohibited them using it or it was never going to be sustainable we begin with and they didn't have the experience to know that up front that's amazing and mary you have kind of a different end of the spectrum here taking care of caregivers  yes i'm a dementia care survivor become an activist an advocate and i'm grateful to be alive today and i'm grateful that over the last six years i've been able to move forward from the devastation of dementia with two goals and those two goals are saving the lives of dementia caregivers which many people don't even know is a topic and building accessible gardens and i've become an expert on this topic take care of yourself for demen care givers i write about self care website merrimac missions dot com i speak about this topic i lead retreats and give workshops on this topic and starting this year i now offer a two hour guided respite retreat at our home in topsfield we have a cottage on our property that we've allocated specifically for respite retreats and i'm giving those two hours at a time because that's the time that i know from  survivor as well as i've known from the people that i've met through my journey that's all the time that they might be able to get away if they're twenty four seven caring for someone with alzheimer's  in the respite retreat i'm a certified yoga instructor now it's about letting go it's about releasing the stress just for that two hours so that person can maybe just sit on a park bench maybe just have an indoor guided restorative yoga session for sixty minutes one on one with me where i lead them through a gradual real action relaxation of their body which they might discover something new that they that then they can take home and practice that's a big goal of mine is to when i'm a teacher being able to give people tools that they can then take home and practice in two thousand and eleven we made our gardens wheelchair accessible it was really in the spirit of my mom margaret who passed away at the age of sixty seven with the front of temporal dimension the tenth of a mile loop it offers access to seven awesome unique garden spaces it's a in ways that promote holistic there appear to benefit i like to say every knows may smell a rose and our friend marion de blasio who's a member of our  visited she's a wheelchair user and she said what i like most was the intimacy with the plantings all of the plants are right there in front of you and of course there are areas you're still working on making accessible but being a from the northeast our burlington house helped us toast the trails they wrote in our guest book thank you for such a wonderful positive experience what you've created is a work of beauty and we would love to come back thank you very much from the staff and residents of the house in twenty fifteen we added a memory cafe to the once among sunday strolls program this is new for us what the memory cafe does is offers refreshing outdoor environment for the care partners and the people living with memory loss and or physical disabilities and we welcome people any stage of the degenerative disease process it's an opportunity to enjoy beautiful gardens conversation network with people very much like leonard's program who are in the same boat as you are there's no judgment  with the guardians it's a wonderful opportunity for photos we invite people to bring a picnic and our passion is really to serve these people who are twenty four seven in their home and many people feel like they're imprisoned am the mother of a daughter who has schizophrenia and i was the wife of a husband who had borderline personality disorder and so i know quite a bit about mental health and i'm a sahm an expert when my daughter became ill with schizophrenia i knew nothing about mental illness a s many people many people are like that they know nothing about it it doesn't affect their lives but it's certainly affected mine and so then my daughter became worse and worse and as i look for people to help me there weren't any as i look for people that help me they tended to go away relatives would just stop being relative to my child or grandparents were out of their will it was really devastating and my husband was absolutely no help he was a police officer and he had borderline alive nothing worse than a raging police officer so i really was i had to do it myself i had to figure out how can i help my girl when i know nothing about the illness so i started my own chapters of the alliance for the mentally ill and what i would do is i would bring in people for meetings that would educate me not only the people that were my audience and because the hospitals wanted to put her in a shelter and i had to fight for her with politicians the politicians help me so i decided at that point they're the only people who are helping me and so the hospital became so intimidated by the politicians that they let me hold meetings in the hospital and they let me bring down the people in the locked unit and they let me have the best refreshments they could give me and that's why the people from the lock units love my readings but other people did too and i learned so much from all of these psychiatrists c e o psychologist and a so i learned about schizophrenia and i learned about borderline so then i started to go up in ranks as far as committees until i got to the top and then i became the president of the national alliance for the mentally ill of massachusetts and then things went much better for my girl i had to keep her in the system she was in a halfway house but they didn't get the food they didn't have good furniture the place was dirty and  that's the way halfway houses were and the staff would steal from the patients so i had to do something which i did and and the the best thing that ever happened to me was my picture was on the on the board of this halfway house and these people love me and i would go in there and have supper with them when the department of mental health decided to make things better and the department of mental health brought in new furniture new food changed the staff so they weren't stealing and my daughter was in the locked in thirteen times and when she was under the department of mental health they gave her medication that brought her back to me within three weeks and i can't be more grateful for such a thing but i have gone on and on and on to help people with mental health issues and keep on going and i have a program called mental health matters that i hope you do what it's a get rid of stigma so that's what i've been doing stacey and these are just all amazing stories like i said and i'm going to steal your you're one of your possessions mary is that really what you all are doing in your own way of saving the lives of caregivers that like p nobody you know you don't know until you need to know and then trying to navigate any of these systems is mind boggling and just overwhelming and there's nothing like a peer or an advocate to kind of help you hopefully along the way you really hold i'm sure we've been holding me but holding the dinners approximately every three months in our first dinner which was in dover massachusetts really weren't sure we knew we had something there but we really didn't know how many people are going to show up so i'm trying to work with the restaurants and be thirty people or forty people or fifty we had about one hundred fifteen people show up how which is fantastic and has more and more people started walking through the door the manager of the restaurant started sharing more and more of the owners that were there before us into other parts of the restaurant and really by the end of it we had about three quarters of the restaurant if not all  felt so good about participating in wanted to come back and do more last december only a few months ago we had our eighth dinner back where we started it was kind of a two year anniversary slash holiday party dinner and you know we get families that are coming repeat families that come to just about every dinner we've had and we also have families that are driving in from two three hours away to join up on a monday tuesday night  part of that community and feel that way that is wonderful thank you and so you're actually going to try to expand one of that you know we are take this program across massachusetts we're doing that with the help of the coalition you know we've just scheduled our  april fourth dinner and watch them and you can check out the website i'll give my plug i didn't eat start work for for more information about that and we'll have a second dinner in april as well probably in the north shore coincides well with april which is autism awareness month and then the plan will be to really grow the radius of the programs and and start running dinners in multiple communities across massachusetts do  simultaneously so that we won't just have one dinner kind of in this merrimack valley metro west area every three or so months but we'll be having frequent dinners every month or so multiple dinners every month or so all across all across we're we're we're very excited about it and we've had some press you know the boston globe sets and people to our december dinner and that's helped get the word out and that's when someone viral half a day off from work today so i could drive from wow what's there to come to your dinner because i haven't been able to take my son or my daughter or my family out for a meal in the last four years you know it it kind of gets you right there it means a lot and  you're doing something good and doing something good for the families and for the caregivers and the extended family and let them go out as we get aunts and uncles and grandparents and teachers and everybody everybody that's a part of that well i guess it kind of started four years ago when i was volunteering with then earning program for children with down syndrome and that got me plugged into the disability community and understanding what was like to have those issues to have those things you're dealing with a new life which is not a disability but society and that's when i learned what they said before that the children actually have it is this huge gap where of lack of resources lack of training lack of employment lack of understanding in society of what people with disabilities are actually careful of contributing to society at the social media i learned that there actually are a lot of social enterprises from which a nonprofit but some which are not that tried to fill in that gap and i was so excited two months of thinking that this would be a school if somebody did that i got a phone call from an organization that does all kinds of workshops they're called landmark education and they i had done the workshop with them that work for a project of the community and they want me to come back and do this program as a coach and we got this project in the community i have an opportunity to utilize this workshop to create this project i was just thinking some of the art to do with if i play has led in my life and so i thought of the idea in april in june i was in the workshop laying the groundwork saying ok do i want this to be a nonprofit or for profit organization and it's very clear to me that it has to be a for profit business that the mission of it is to say that hiring people with disabilities is not charity part there is really important partnership for power cafe was in the station called triangle which is based in malden and they do a lot of training and mentoring and matching of people with disabilities into the workforce and again total coincidence i call them up in june of i guess two thousand and fourteen that same summer they were launching a culinary arts program at area but triangle was really proactive kept the direction ship with me you know introduced me to their first class you know the they had what happened later i finally found the location that we're in right now in the summer of two thousand and fifteen and i called trying again and they matched me up with two people from that year it's class one of whom actually knew me from my previous career because i used to be a math teacher and it's been really awesome working with them and watching both of them really take off for a life to say the success or failure of this business is all on me they know what they're doing if it's up to me with i can figure out what i'm supposed to do as the you know foreigner of the business and i said that this is run entirely by people with disabilities i asked people to get together for one show after a presentation by the department of developmental services on available day programs and i invited a bunch of families and we went from that initial lunch meeting from there  and when we incorporated we decided to make it a membership based organization because we had a distinct feeling and we were right that probably half a dozen people were going to do ninety percent out and at least folks could you know pay their thirty five bucks a year and cover some photocopying started it did twenty five and i was thirty five but  it's and primarily we work people through a series of stages so ideally we try to get people familiar with what we call the turning eighteen checklist which is exactly what it says this is everything you need to do when your child is about to turn eighteen and here on the other side of this piece of paper are all the internet links for how to do it because when i was first getting started in this i realized i have an ivy league degree and i'm not working full time right now and it took me three days to figure out how to apply for section eight for my son how was everyone else doing this so we really needed to have it at people's fingertips to go through it and so we try to start people with a turning eighteen checklist on our website we have something called my benefits generator which is an interactive tool you can use to figure out what mass health disability programs your family members likely to be eligible for and how to apply for them we do to our introduction introduction to housing workshops called thinking about housing we have daylong housing workshops called learning about housing for when people are really ready to roll their sleeves up and get started we have downloadable free housing workbooks for individuals with disabilities and they are written is three different reading levels there's an eighth grade reading level there's a first grade reading level and there is there are materials written for folks who are nonverbal that use activity  books with stickers and in addition to that we are just put out a series of visuals visual supports for folks who live in group homes a so those are downloadable at a very discounted price thanks to the funding that we got from the winchester rotary club that allowed us to develop them and so those are visual supports for doing laundry doing dishes taking a shower getting dressed brushing your teeth wash your hands etc because there's really three pieces to housing one possible with or without a caregiver because the more skills you have even if you need a caregiver the easier it is for everybody and and part of what goes with that is maintaining ten tenancy because a lot of folks have difficulty maintaining tenancy either because they don't understand the hidden curriculum of being a tenant or there's problems with property damage or whatever else and so and i think i already mentioned services which is really the third piece and it takes about five to ten years to put together a housing plan and execute wow and that five to ten years starts when you start so if you start when your child is eighteen they may have a place to live when they're thirty but if you don't start until they're thirty they may not have a place to live until they're forty five and so that's why people say oh my kid is just sixteen so i said how come you need to hear this now because you don't know what you don't know yet and and so that's a very that's really the driving force people don't realize that eighty five percent of people with autism who turn twenty two are not going to be receiving housing through the department of developmental services or converse only they're not going to be able to afford housing on the market open market because they are not employed full time in a rate that will allow for that so you've got eighty five percent of that population that is going to need affordable supported housing and it's pretty much on the families to put it together it's incredible and you say whether populations are specifically autism we we serve other populations it's all developmental disabilities it's started out as autism frankly because a lot of us will it will the group that founded it was all autism parents with one exception but we had all had the experience of going to organizations that were supposed to be for people with special needs more broadly and it had not worked for us and so we were trying to flag this as it were that yes we do mean you and so yes but we work with people whose kids have a wide range of disabilities and it's interesting i was it the care conference last spring and one of the tracks that i tended was on the impact of autism disability on the sibling and you know my my daughter at the time was  eleven or twelve years old and just thinking very small in this way i was thinking more on you know maybe some of the social impact of having a brother with autism you know m be barrister how do i take them out or you know my parents might ask me to drop them off somewhere pick them up or something but it really wasn't until sitting in that in that tract and understanding a lot of these things that no no we're not just talking about two little kids here we're talking about what happens when he gets older what is the impact on the sibling with helping to provide you know maybe it's financial assistance or legal or housing or vocation all of those things and it just completely was was outside of my realm of what i was thinking yeah you don't think about it to write you're so busy with the day to day things i'll put a plug in for the massachusetts sibling support network so that's a great resource out there mary you have so many things going on i don't even know where to start well i was invited to write how did i get here for spiritual directors  and i thought ok no problem i write about this every month in my newsletter and this won't be any problem but when i sat down to write it the monday after thanksgiving weekend and i set there at my computer saying why am i paul to serve people with the ship and their caregivers i was surprised i was absolutely surprised i thought ok well because i nearly got run over by dementia that's why i'm called because i'm gonna survivor's mission and this was the language that i had been using you know through all the grief work that i've done why i'm on this path then when i really really looked at myself say mary why are you doing this and all my family saying mary why are you doing this it really came down to the fact that i was born a cradle catholic to two loving parents scottish irish joe and margaret scottish irish fighting irish this is in my genes to be a fighter in upstate new york where the grey days outnumber the sunny days i've listened to catholic social justice teaching my entire life in my young life i received positive mentorship which was absolutely key because my young life was not easy i had a bumpy road and i was in eager seeker and led me to boston college where i got a master's in ministry in one nine hundred ninety  nine i had some career discernment shortly after that you know graduation more i then figured oh well i don't think i want to be a hospital chaplain at the age of twenty five right now let me go get a ten year degree ten year career in user experience design in the corporate world so i went into the corporate world and big business is paid me a sustainable living wage to make their websites easier for their constituents to use then dimentia came i can pay my rent and that i've got some nice furniture but a dimension came and i had to pack up my whole place and put it into storage i had to move a state away i had to leave my friends i had to leave my fiance i had to leave everything i knew in the boston area and go to upstate new york and start managing the care of margaret who and when i arrived in upstate new york that started eighteen month decline of her of her and i nearly died managing her care  her type of dementia is called frontotemporal degenerative brain disease is mclean hospital is just down the road the doctors there told me mary i'm so sorry your mom has this one this is the toughest one and it's the toughest because the symptoms are changing every two weeks and the family never has a chance to arrive at a plateau of ok were in phase one now or now ok now we're in phase two are now in phase three the family is like what behavior are we seeing now from our loved one and own our loved ones falling down we need to go to the hospital and well now who is going to take or what is the living is going to take our loved one you know because she has these behaviors but these physical problems like god she you know i nearly died because i was managing her care for eighteen months across state lines and there were fifteen moves in less than twelve months between acute care assisted living in nursing care facilities and margaret died on christmas eve and twenty away at a nursing facility in bed for in mass in twenty zero nine i moved with my spouse carl and i had p t s d into our home in t others and in two thousand and eleven i hit the road you know in church basements in long term care facilities talking to any caregiver group i could get myself in front of  the take care of yourself topic and twenty twelve i married the man who loves me and loves gardening and really my path is one of listening and i am a contemplative person i basically listen morning noon and  afternoon and night time and i go out to the garden i sit on the bench i listen and this ice i really feel the spirit is in charge the spirit i'm taking orders from the spirit the spirit is totally me mary you need to do this i say ok i'm going to do this and then and then blessings come and it and people call blessings c people say this is the right thing to do and i must i'm called a social entrepreneur and they people say it's the hardest one of the hardest jobs because people don't understand you have to educate everybody about what you're trying to sell here you're selling where they've never heard of it  they go yeah all right so much your goals are really to save these lives of dementia care givers through speaking anywhere i possibly can and to build these gardens the memory cafe give people a sense of respite give people to our guided respite retreat be present i mean chaplains in training right now to further and sharpen my skills on chaplaincy because i i feel i'm called to be a chaplain for the people who are dealing with one of the darkest most uncertain damaging illnesses of our time thank you pat you've been an incredible advocate for a very long time to many many sick there were many years there that i knew my husband had borderline i knew he was full of anger but what was most important was i knew he knew nothing about schizophrenia so if he as a thirty year police officer knew nothing about mental illness then the rest of the people that were police officers knew nothing and the so i wrote a program called people with special needs and i wrote another one called the troubled mind and i went about teaching eighty five hundred police officers in true mental illness and what i would do would be to i  don't mind begging you know i would do anything to get rid of stigma of mental illness and i would i would beg the police chiefs or whatever you know how about how about your you r forty or fifty people on your police force do they know anything about it no they don't would they like to learn it yes they would so between the police officers the in service training the police recruits the e m t the firefighters the libraries anybody who would listen to me i would talk about the mentally ill the innocent rable people with mental illness and and they are people have no idea that perhaps their child is going to get sick at the age of eighteen or nineteen all way up to thirty five but it's between eighteen and twenty four so and my daughter luckily got medication that brought her back to me but i can't say that happens with everybody and so i taught eighty five hundred police officers and i kept on going i got out every school every committee that i could get on that would lead me of the ladder for mental health education and to get rid of stigma so i finally got up the highest statewide advisory committee and and i actually became the president of the national alliance for the mentally ill and what i ended up doing there was i put up twenty five billboards mental illness is a physical illness medication works treatment works and i put those up all across massachusetts they got a thousand dollars apiece you can put up a sign a billboard for nothing if you want to b bush on the expressway if you want it at the bottom of the state house steps when you have parity bill is being talked about for insurance equality the first step towards ending discrimination when you put it at the bottom of the state house street and all these politicians of the walking up to work can see it and then i ended up i wrote the mental health parity bill i also for the department of mental health i became the i on their committee for the sale of denver state hospital all the state hospital for closing and so my job for the environmental health was to get more funding for offsite housing for the mentally ill so for a year and a half when all of these buyers of danvers would sit around and talk about how they were going to keep the front of inverse and act we cause it's a beautiful building it's just gorgeous and on the inside it's all hand wood working etc well as they're sitting around telling the committee ok we're go this much we're going to pay this much we're going to do this or we're going to do that i would be educating them on the people that were sitting on the steps of this condemned building waiting to be let back into their home because that's all they had ever known and it was built for five hundred people originally and at the very end there were twenty five hundred people in it so i was educating all of these people  about mental health and they would at the very end when avalon bay bought it and they came to me and they said pat you're going to be very happy and i said why and they said because we' giving you four point seven million dollars for offsite housing to the department of health which is what they put in trust and used and so my my mental health show which is s production so that i can get real estate or help at least you know i need more movie stars up there asking for money for more research you know mental health is right down the bottom of the of the barrel and it can't be it just can't be because one in four families experience a mentally ill member and it's worse than death it's totally worse and because in this you have an ending of finality with mental illness you have the child that's grown up in maybe in your house and you're living with schizophrenia and  hallucinations and delusions every day and it's so hard for the families so i wish people would realize that and we need grief counseling we really do before we hear the music what advice do you have for people i know this is a loaded question and we're going to run out of time but you guys did it you saw this need and you made it happen like what's your advice if somebody has got an idea or they see something that's missing where   and as i turned to talk to my wife i saw that the color drained from her face and i turned back around and was on his way to the third table grabbing slices of pizza off of every table he get his hand on while he ran around the restaurant and i've chasing him and he was laughing and having fun and you know looking back it was the it was pretty funny at the time but it illustrated the point that they were going to do something and i know exactly what doesn't work so maybe if i can do the opposite we'll have a program that does work and once we started writing it out the next step was just talking to people about it letting people know what we're trying to do and asking if they want to be involved with it somehow and i think you know similar what was saying is once you have the idea once you start going out there with it you'll find a lot of people want to be involved a lot of people want to help you out and introduce you to other people that want to help you out and  just snowballs from there and and you learn as you go but the first step is just saying i'm going to do something and going out there and going public and making it happen and testing and so can i put it that there to all of you that if anybody watching the show has any questions or ideas that they're free to contact you and to look at it and also if you want to contact the massachusetts lifespan respite coalition at mass respite that org we can help you get in contact with other people who have similar thoughts and ideas because there's amazing stuff happening and  now and i want to thank you so much for guests i really appreciate it and your stories and your organizations are so empowering and you are all making incredible differences in the lives of people as you know caregivers and