Overview of housing possiblities for people with autism

I received a comment on my recent blog post on the CMS proposed regulations for HCBS waivers. Not only is the comment insightful, but it includes a link to a report on housing possibilities for people with autism that anyone interested in this issue should look at.

Here is the comment:

It appears to me that the proposed change is a hatchet rather than scalpel approach as it relates to HCBS Settings. The risk is that a very narrow interpretation of what "community" and "appropriate to their needs" mean will prevent development of specialized group homes or small, campus like developments in non-urban areas. The elimination of these choices will particularly fall hard on adults on the autism spectrum disorders who, any of the too few existing providers will tell you, very often require lower staffing ratios, higher degrees of support, and very specialized, highly structured programs and facilities. There is an acute need to create more housing stock and programming for adults with autism and this proposed reg looks like it'll kill development. For more on what the autism community actually wants, please take a look at the "Opening Doors" report: http://www.autismcenter.org/documents/openingdoorsprint.pdf

I briefly looked over the Opening Doors report from the Southwest Autism Research & Resource Center (SARRC). The report is packed with information on a full range of housing alternatives, funding sources, model programs, diverse living arrangements, considerations for design of housing and living spaces, and much more. Any individual or organization thinking about developing housing and living arrangements for people with autism or any other disability, for that matter, should take a look at this.

Thank you, anonymous, for taking the time to share this information.

Proposed federal regulations on Home and Community Based Services: Is it more flexibility or fewer services?

The Centers for Medicare and Medicaid Services (CMS) has proposed regulations that will affect how Habilitation Supports Waivers (HSW), as they are called in Michigan, will be administered and what they will fund. Even if you have never heard of the CMS, the actions of this federal agency can have a significant effect on services available to your disabled family member and how they are provided.

The Habilitation Supports Waiver now funds a variety of services, including Community Living Supports, vocational and skill-building programs, day programs, services in unlicensed supported living settings, and services in group homes. But this could change.

Here are some of the things these proposed regulations would do: 

• They would allow the states to apply for waivers covering a combination of groups, rather than targeting specific groups in each waiver, such as people with mental illness, or people with developmental disabilities and mental retardation, or people who are disabled and aging.  
• They would disallow certain settings, because CMS has decided they are not "integrated in the community". A setting is not integrated in the community if it is "located in a building that is also a publicly or privately operated facility that provides inpatient institutional treatment or custodial care; in a building on the grounds of, or immediately adjacent to, a public institution; or a housing complex designed expressly around an individual's diagnosis." or "has qualities of an institutional setting", as determined by the Secretary of the U.S. Department of Health and Human Services. 
• The proposed regulations also add requirements for person-centered planning that seem not to recognize the limited abilities of some individuals to direct their own person-centered planning process. Also, the person-centered plan would reflect services and supports to assist the individual, both paid and unpaid, and be signed by all individuals responsible for its implementation.

Unanswered Questions:

• Are there safeguards to prevent people with incompatible behaviors and disabilities from being placed together?
• Are families who provide so-called "natural supports" now subject to regulation by CMS?
• Is there any role for guardians and families, other than as unpaid service providers?
• Is it "increased flexibility for states" or fewer choices for people with developmental disabilities?
• Could these regulations take services away from your family member?

Comments on the proposed regulations may be submitted to CMS through June 14, 2011.

Here is a link to the proposed regulations.

Michigan group home for DD adults built on campus of retirement community

Faith House,  a new 7,243-square-foot group home for men with developmental disabilities, has opened on the campus of Covenant Village of the Great Lakes, a continuing care retirement community in Grand Rapids, Michigan.

This is from the press release for the opening:

"Covenant Village donated a little more than half an acre to build the seven-bedroom, seven-bath, ranch-style home. It includes a spacious family room, a completely outfitted kitchen, a two-car garage and a backyard deck. The lower level has a two-bedroom apartment for live-in managers who are available day and night. Residents live together, yet independently, in a supportive structure.

"As part of the Covenant Village family, Faith House residents can enjoy the same 40-acre wooded campus as Covenant Village’s senior adults. Faith House residents can access many of the community’s facilities. Covenant Village also offers its Faith House neighbors intergenerational, volunteer and work opportunities...

"The goal of Covenant Enabling Residences of Michigan is to provide a safe, caring environment for high-functioning developmentally disabled adults. Individualized, carefully monitored programs challenge residents to reach their potential through education, training and the development of social skills. In addition to Faith House, Covenant Enabling Residences of Michigan also oversees Mary’s House and Joseph’s House. Located in Muskegon, one provides a residence for women and another for men."

Funding to support Enabling Residences of Michigan comes from:

• Federal grants and Social Security funds
• State/local funds
• Private pay
• Residents' earning
• Special gifts from churches
• Volunteer and monetary support from families and friends of residents   

 Follow the links for more details on these residences and contact information.

Michigan Health care providers: It’s OK to say you're sorry

An article in the Detroit Free Press, 4/20/2011, reported that a new state law will allow health care providers to offer compassion to patients without fear that expressions of sympathy will be used against them in a lawsuit. 
 
According to the article and the Senate Fiscal Agency, states that have "I'm sorry" laws have fewer and smaller malpractice claims than other states and medical institutions that offer apologies with financial settlements. The law would not shield health care workers who admit medical fault or negligence.
 
The article notes that the University of Michigan Health System reported "its average cost of lawsuits was cut in half and patient satisfaction increased after it adopted an 'I'm Sorry' policy nearly a decade ago."
 
I can vouch for the success of the University of Michigan's policy. My son was in the ER one night for over six hours when we discovered he had been mistakenly discharged several hours earlier while he was getting X-rays. I was not planning to sue the U of M, but I was plenty angry that Ian went home without a diagnosis for what turned out to be a broken knee-cap. 

I wrote a letter to Patient Relations and received a prompt reply. Instead of going into a defensive crouch and denying that a problem existed, Patient Relations investigated the matter and admitted that a number of things were handled poorly. They had talked to staff, and were retraining them to follow procedures to prevent this from happening again. 
 
If you have complaints about the U of M Health System, you can contact Patient Relations in the following ways:

• Walk-in: The Patient Relations office is located in University Hospital, Room UH 2B228, and open Monday through Friday, 8 a.m. – noon and 1-5 p.m.
• Phone: Call 734-936-4330 or toll-free 877-285-7788.
• After hours, weekends & holidays: Call 734-936-4000 and ask to have a House Manager or Administrator-on-Call paged.
• Online: Fill out a secure, confidential online form

The Patient Relations Website is here.

Community Resources: Heated pools at the Romulus Athletic Center

It is usually hard to find places that can accommodate my sons for fun recreational activities, but today I discovered a great place for people of all sizes, shapes, and degrees of disability. A gang of kids from Ian's school, High Point School in Ann Arbor, took a field trip to the Romulus Athletic Center to swim and play in their water park.

Water temperature is always a concern for people with severe physical disabilities, even for Ian. He is relatively beefy compared to some of his classmates, but can't tolerate anything that is colder than a warm bath.

The Lazy River Pool, heated to about 88 degrees, has a gentle current that flows around a 240-foot loop and is the closest Ian has every been to river rafting or body surfing. It is also great exercise for people who can walk against the current. Inner tubes are available. Many of the High Point kids use flotation devices that keep their heads above water, but allow them to move freely underneath the surface.
 
The Splash Pool, heated to about 86 degrees, is a large wading pool with lots of surprises, including intermittent geysers, a 150-gallon tipping bucket, a water curtain, and numerous sprayers and water jets. The sound effects are enough for me, but even very young children seemed to be having a wonderful time.

A four-lane Lap Pool, heated to about 80 degrees, is available for real swimmers who can handle deep water (10 feet at one end).

The Hot Tub/Spa is the biggest hot tub I have ever seen. It is heated to 103 degrees and has numerous water jets and bubblers. Children must be at least 16 years old to use the Hot Tub.

Then there is the two-story, 120-foot long water slide (at 86 degrees). Fortunately, it was not open today. There were a number runners and darters in the High Point group who would need to be carefully supervised to even get near this contraption. I'm sure it is thrilling for the right group of people.

The water park has a chair lift that is always available with pool staff to get people in and out of the pool.  There were at least two lifeguards watching at all times that we were there. Most of the pools are accessible by either ramps or shallow steps.

The RAC is owned by the City of Romulus and is located near the Detroit Metro Airport - very easy to get to from I-94 on the Vining Road exit. Fees vary depending on age and residency. A one-time fee for non-residents is $10. The center also has basketball courts, exercise machines, a climbing wall, a cafe and snack bar, a day-care center, an indoor track for running and walking, and many classes and fitness programs.

Who knew?

Announcing DD Advocates of Michigan

from Ed Diegel,
Advocates for Persons with Developmental Disabilities in Wayne County.
ddadvocates@gmail.com
and now at ddadvocates.com

We are announcing the formation of a state-wide network to be known as DD Advocates of Michigan. We anticipate that this state-wide network will help us broaden our reach and improve our effectiveness as a community building, process improving, effective lobbying, common sense driven advocacy organization!!

Why is the ddAdvocates of Michigan Coalition being formed now?

The State Wide Network is being developed this year 2011 in an attempt to grow and strengthen the grass roots support base for persons with Developmental Disabilities in Michigan. We realize that 

• Because most service delivery is local and because many families of persons with Developmental Disabilities have their hands full caring for their own loved ones, we do not often understand the local service delivery system and often have not had a unified voice when speaking to local, state and national officials.
• In addition, we have no state wide and in some cases county wide medium for sharing concerns and ideas, identifying unmet needs and celebrating the many outstanding programs, people  and projects that Michigan citizens with disabilities  enjoy,
• Finally, we are not well informed of policies developed and being developed and being interpreted (sometimes differently) at the national and state levels which will impact the futures of our loved ones.

In the face of unprecedented fiscal uncertainty, political turnover and policy interpretations at the national, state and local levels it is imperative that we families and other advocates find a common ground and do the best grass roots lobbying possible on behalf of persons with Developmental Disabilities in Michigan.

Please read the Press Release at http://ddadvocates.com/2011/03/30/dd-advocates-of-michigan-press-release/ and while you’re there, leave a comment welcoming  our new partners from Washtenaw, Livingston and  Ottawa Counties.

Thanks for all you do!

Ed Diegel

New DD Advocates of Michigan links to Facebook and Twitter!

Michigan special education for students 22 -26

The Michigan budget process for the 2012 fiscal year is underway with significant cuts to education on the table. In times of financial stress, special education programs that serve students from 22 -26 years old become an easy target for budget slashers, especially those who know next-to-nothing about the students served and how highly these programs are valued by both students and their families.

Special education for disabled students over 21 years old who cannot complete a regular high school curriculum has been mandated in Michigan since 1971 in a law that pre-dates the 1975 federal special education law now known as IDEA. Most of these students (there were about 3200 of them statewide in the 2009 school headcount) have moderate to severe disabilities and, were they not in school, would require intensive services from the community mental health system and other agencies. There are higher functioning students who also fall into this category for a variety of reasons, but the vast majority have moderate to profound developmental disabilities.

It is true that no other state extends special education beyond the age of 21, but if these programs were significantly reduced or eliminated, it is difficult to believe that the cost and disruption to students and their families would be worth the savings, if any, to the state. There have been some assertions that these programs impede the transition of students to their communities and the services they will need later in life. These programs, however, are not compulsory and for those who participate there are built-in protections in special education rules to assure the right to appropriate services for individual students.

The Washtenaw Intermmediate School District (WISD) offers a variety of programs for students at all levels, many of them based in local communities and focused on skills needed by individuals to move on with their lives. Students like my son Ian who will graduate in June from the program at High Point School in Ann Arbor, have benefited over the years from the remarkable skill with which the teachers, aides, and other professionals work with students with even the most profound physical and mental disabilities. 

The transition from school to our chronically under-funded and fragmented system of services for disabled adults is described by many families as similar to "jumping off a cliff". The experience would be no less painful when your child is 21or 22 than when he or she reaches the age of 26.

**************************

As far as I know, there is no bill in the state legislature yet that proposes to eliminate or change these programs, but that does not mean that it couldn't happen. There is one written proposal to significantly change educational programs for this age group that comes from the Michigan Association of Administrators of Special Education (MAASE). I will comment on this later.

Now is the time to take action!

The legislative Spring Break starts March 28 and lasts to April 11, 2011. It is important that each of us contact our legislators this week. 

• Tell them about what services are important to you and why. 
• Remind them that persons with Developmental Disabilities are among the most vulnerable in the State. 
• Tell them you are counting on them to protect programs

In addition, ask that your legislators keep you informed of any proposal to change state law and request that there be public hearings to allow students and families to make their views known if any changes are proposed.

You have the most influence with your own State Representative and State Senator. Find out who they are, if you do not already know. Click here for information on Washtenaw County state legislators.

Additional suggestions to get your message across to your legislator: Find out who in the legislator's office handles special education and other disability issues. Talk directly to that person and send written comments to relay to your legislator. Find out if there are events for constituents during the Spring Break and meet your legislator in person. Follow up later with a phone call to ask if there is any new information on legislation or hearings on these important issues.