The winter holidays are almost here. INDEX staff updated two fact sheets that people might find helpful. Holidays can be fun. They may be stressful for many people and families.
We want to share some information about Personal Care Attendant Services in Massachusetts.
The Personal Care Attendant Workforce Council developed new training videos for Consumers, Personal Care Attendants (PCAs) and Job Seekers. These videos explain:
Directory Basics Video
Consumer Video
Worker Video
There are questions and answers for both consumers and workers.
Consumers that need PCA services during this public health emergency can call the MassOptions call center at 1-844-422-6277.
The MassOptions call center will connect these consumers to home health services in their region
The cost of places to live has been going up. A lot of people have a hard time finding a place to live. People with a disability have a harder time in finding a place to live because the apartment has a long waiting lists and it takes a lot of years to get to the top of the list.
Sit with the person and make a list of places they want to live in.
Go online to any state housing website and look through their list of apartments
Look for the department that has all the states apartments for an application. Print an application and mail it.
Call the main office and ask them if they have an open apartment. If there is one, ask for an application to be sent to you.
If you have a case worker, talk to your case worker to see if they know about any place that you could live in.
Keep calling places and ask if someone moved out.
Put your name on email lists.
You can look for an apartment by writing where you want to live and how many bedrooms you want. They also have apartments that you can pay for your rent depending on how much money you make.
As a doctor for children, I often talk about sleep during wellness and sick visits.
Sleep is an important life skill. It teaches children how to calm themselves and rest. Parents have an important role in helping children to healthy sleep habits. Improved amount and quality of sleep affect children’s behavior and abilities to think.
Below I will discuss some tips that parents can practice for healthy sleep habits.
Decide with your family when is a good time to start sleep training.
Decide how many hours of sleep your children need. Infants sleep for 12-14 hours. Hours decrease gradually as children get older. On average, children need 10 hours of sleep. If they nap during the day, do not forget to account for nap time to the total daily sleep time. For example; 2 hours nap in the afternoon will leave your children with only 8-10 hours of sleep at night. That can be a reason why children go to bed late at night or wake up very early and refreshed.
Talk to your children about (tonight’s plan). For example “we will take a bath, read a story, and then it is bedtime”. Change the language based on your children’s understanding. Young children would benefit from (first…then strategy). For example “first we take a bath then we read a story”. Use picture books to share stories about sleep.
Use a reward system. Rewards can be increased or spaced out. Rewards can be an activity the children will enjoy, for example spending play time with parents, or reading a favorite book together.
Do not get discouraged quickly if some attempts are not successful. Experimenting is a key. Some plans do not work the first time or at all. Try different things. For example, some children may prefer bedtime stories and some may prefer bedtime song. Other different options parents can try; white noises, a night light, a security object/blanket or all of them.
Avoid high affect games or TV before bedtime. Bath and stories can help to relax your children.
Remind your children that bedtime is soon. For example “5 more minutes to bedtime”. Some children do not tolerate transitions quickly. You can use a fun or colorful alarm clock as a reminder.
Increase their Melatonin Dark room, with no TV or electronic devices.
Create sleep associations. Children like their routines. It is ideal if they go to sleep in similar conditions every night (same bed, room, lights off etc.).
For younger children, put them to bed semi-awake. Allow time for them to calm themselves. This way they learn to go back sleep if they woke up the middle of the night.
If your children cry in the middle of the night, attend to their needs. Comfort them, but avoid picking them up or bringing them to your bed.
When I got accepted to the Boston University School of Public Health in the spring of 2012, I was excited and thrilled, but underneath those emotions was a layer of dread and anxiety. My acceptance meant that inevitably I would have to move from my home in rural Maine, to the big city. This of course was my intent when I applied to the graduate program at BUSPH, but the fact that the transition would now be a reality was nothing short of daunting.
I began telling people about the upcoming move for both my boyfriend and I, who use mobility devices to get around independently and would require fully accessible housing, and received varying reactions. Many people shared the same initial thought of, “What are you, crazy?” and we were told horror stories of the lack of accessibility within the city. I had spent months researching academic programs, and where I wanted to live, and although I had researched cities based on accessibility, but I refused to let my disability and physical challenges dictate the direction that my life would take.
We began the housing search feeling optimistic. Being from small, rural areas, we had what we thought was a reasonable budget and we had lots of connections in the disability community, both in the state of Massachusetts and nationally. What we found however, was that those things only got us so far. The university was supportive, but they had limited options for graduate students, and none that would be sufficient for two people who required accessibility.
In our early phases of searching, we started by looking specifically for just accessible apartments. We spent hours scouring Craig’s List only to find hundreds of old, cramped low budget apartments with flights of stairs for an entrance. There were many within our budget, and we discussed options of how we could “make it work,” through various accommodations or just being creative.
I called and emailed every listing that looked like something that could work for us. Nobody called me back, or responded to my inquiries. With our modest budget and request for a fully accessible unit, we were not a realtor’s dream. One broker had a conversation with me about a unit she was sure would be “perfect” but the conversation ended abruptly with a last interaction of her sending me a text message of just a smiley face emoticon.
Another woman called me back and we were able to arrange for a friend to do a video tour of the potential units she had in mind for us. Even from the short videos we could tell the apartments were not accessible, and the agent had no experience with any sort of disability. We knew it was a red flag when her first question to me in our conversation discussing wheelchair accessibility was, “Is one or two steps OK?”
Finally, I took my blinders off of just wanting so desperately to move to the city and came to a conclusion that this was unacceptable. We should not be forced to accept something that wouldn’t truly work for us when other people without disabilities had thousands of apartments to choose from. We were looking to make a move that would change our lives. We were both new at life in the city; we were going to be away from our immediate families, and taking on a lot of things for the first time. Wherever we decided to live, was where we were going to be for the good, the bad, and the very ugly. At the end of the day we did not want to get into our apartment and have to exert the last bit of our physical and emotional energy to do something simple like use the bathroom. This was going to be our HOME. I understood that going to grad school would mean that I would have to make sacrifices, but I was not willing to sacrifice my inclusion in society for the sake of finding housing.
It was at that point that I decided to reach out to our friends in the disability community. I contacted the regional Center for Independent Living and explained our situation, of how we were hoping to live independently in the city of Boston, and our tight timeline of needing to move in time for me to start classes at the end of the summer. The woman I spoke with was kind, but her response seemed automated as she began explaining the process for applying for subsidized housing. I kindly explained to her that I was not looking for that kind of support, simply buildings that were accessible. She seemed surprised at this request and was silent for a moment. It seemed odd to me, that in asking for LESS support, it could actually be more difficult of a request.
She referred us to a registry that listed all the accessible properties in Massachusetts and that could be searched based on various criteria such as location, budget, or specific accessibility features. However, in using this search engine, we only found buildings that were specifically for senior citizens, individuals that were of low- income, or were located a significant distance from the city, or a combination of all of those things. The more we narrowed our search, the fewer listings that resulted, and we started to realize that what we were looking for simply did not exist.
Just when I was actually considering deferring my educational offer, in a last attempt, I reached out to a particular property that looked promising. It was far beyond our original budget and considered a “luxury housing development,” but it was fully accessible, safe, in the ideal area, and had amenities that would actually make our lives easier instead of harder. Within days, the apartment was ours. It was a 500 square foot studio, so we knew space would be a challenge, but we saw no other options.
We have been living in Boston now for almost two years, and I have become even more passionate about the existing housing challenge. While many people living with disabilities are aware of the struggles to find accessible, equal opportunity housing in the city, I have learned that it is not necessarily common knowledge to those without disabilities. All students struggle to find housing in the city as more and more people move to Boston each year, but when I told my peers that we were given the option to live in a nursing home so I could attend school, they assumed I was joking.
People assume that all buildings have ramps and elevators, and bathrooms that can fit a wheelchair. Until they start looking at things through a different lens, they just believe the city works for everybody. The truth is that the housing options for people with disabilities are limited and segregated.
While the models that are available may work for many people, they should not be the only options. Housing is ultimately the foundation for all people to live healthy fulfilling lives and for people with disabilities, this component can be even more crucial. If people are forced to live in unsafe conditions or away from their peers just because they require accessibility, they will be even less likely to be able to achieve success in employment, education or other endeavors that would help them to become equal members of society.
With the thriving disability community in Boston, and the current political efforts to increase housing in the city, I do believe there is progress being made, but until we have everybody on board, and understand the level of this problem, there is still a long way to go!
Shared living is one of the residential service models available to individuals with intellectual/developmental disabilities (I/DD) who receive services from the Department of Developmental Services. Shared living services provide support to the individual in a natural, family environment.
An important focus of shared living is to foster relationships and promote community inclusion. Sexual expression can be a part of some relationships.
A provider’s role
Shared Living Providers (SLP) can support the person living in their home to develop a positive sexual identity. By providing a supportive, non-judgmental environment, the
SLP has the opportunity to assist the individual with building a healthy self concept, positive self esteem and confidence to discover who they are as an individual.
Another area that a
SLP can influence is the person’s experience of intimacy and building healthy relationships. It is very important for a
SLP to work with the individual to build a home environment that is safe and comfortable. It takes time and acceptance of the individual for who they are to build a trusting relationship and create an intimate environment where the person feels at home.
Some things to remember
• A person with I/DD is a sexual being and has the same need for relationships as everyone else.
• It takes time for a person to adjust to a new living situation and being around new people. Trust has to be built between everyone. Making consistent time for 1:1 attention is a great way to make a person feel accepted.
•
SLPs have to know their own limits; sexuality is complicated. The topics being raised may challenge your comfort level or may be topics you don’t know well enough to confidently discuss. As a
SLP, if you need help, ask your case manager at the agency.
• Take the person’s questions seriously. They are struggling to understand their feelings and learning how to express them.
Together we can make a difference in how a person with I/DD understands their sexuality. In turn, they can learn how to enjoy their relationships in safe, healthy and fun ways.
This month Kathy Kopitsky, Director of the Adult Family Care (AFC) program at the Minute Man Arc in Concord has shared insightful blogs of how Adult Family Care is a great option to living alone, nursing home or other institutional care settings. Adult Family Care is an exciting and growing statewide program in Massachusetts.
What is Adult Family Care?
The term Adult Family Care (AFC) is also known as Adult Foster Care. AFC is a MassHealth program which supports individuals age 16 and older who are unable to live independently due to a medical, physical, cognitive or mental disability. AFC participants live with trained paid caregivers who provide daily care with activities of daily living (ADLs).
Certain relatives of a MassHealth member may serve as that member’s AFC caregiver. Spouses, parents of a minor member (including adoptive parents), or any “legally responsible” relative of the member may not become an AFC caregiver.
For additional information about Adult Family Care, click on MassResources.org link. Scroll down to the A-Z Program list on the left and click on Adult Family Care / Adult Foster Care (AFC). Here you will find excellent comprehensive information about adult family care eligibility, caregiver information, and how to apply for AFC services.
Locating AFC Provider Agency
Currently there are fifty seven AFC provider agencies in Massachusetts. To locate an AFC provider near you:
Contact your local Aging Services Access Point (ASAP) to request list of AFC providers in your area. To locate your local ASAP call 1-800-AGE-INFO (243-4636), TDD/TTY 1-800-872-0166, or go on-line to ASAP Locator
Contact Beth Shelton, MassHealth AFC Program Manager, at (617) 222-7485 or by email at beth.shelton@state.ma.us
Family Care-giver Handbook – Home Care
provides great information about home care services, assessments of physical, health and nutrition needs; and how to find and pay for services.